chronic pain

Menstruation and it’s effect on underlying health conditions.

June 4, 2022 — Leave a comment

You all, or at least those of you that have been following me for a while, know that I am big into learning about how hormones effect mental health. Living with Premenstrual Dysphoric Disorder my whole menstruating life, and an extreme sensitivity to hormonal fluctuations, I have made it a mission of mine to know exactly where I am in my menstrual cycle at all times in order for me to be able to predict how hormonal changes will impact my mood. In doing so I have become increasingly aware how the rest of my health is also impacted by hormonal fluctuations, and in this blog I’ll talk a bit about my personal experience and provide links to evidence based information supporting my theory, that hormones affect everything! Including, mental and physical health.

In 2016 around ten months after my daughter was born, I was diagnosed with Fibromyalgia. I have lived with chronic pain for as long as I can remember, but after pregnancy this seemed to worsen to such a degree that I was becoming less able to function and struggling to participate in every day activities. I also had a range of other symptoms such as cognitive dysfunction, profound fatigue, and an exacerbation in conditions that were already present such as PMDD and Migraine. The same year I was also diagnosed with shingles.

Since then, with every menstrual cycle I have experienced an exacerbation in all of the above symptoms in the extreme.

Society already knows that menstruation comes with its own set of symptoms, like bloating, menstrual cramps and backache. As well as for some women and in some cases, brain fog, nausea, fainting and migraine. But what about for those of us with underlying health conditions? Are you aware, that like me, your period could be exacerbating symptoms of illnesses already in situ? For example, during the luteal phase of my menstrual cycle I will experience excruciating joint pain, severe, frequent and lengthy migraine attacks, reoccurring shingles site pain, profound fatigue, and cognitive dysfunction that interferes with daily living. Alongside common symptoms of poor immune function, such as mouth ulcers, sore throat, wheeziness and more.

Why does this happen? It’s a good question and reliable studies are difficult to come across. So far I have struggled to find any solid UK based studies, that are available to view online. That’s not to suggest there aren’t any, just that we can’t view them. However, as well as studies showing how menstrual health affects mental health, Ncbi have various studies that show how oestrogen, progesterone and testosterone have been known to affect immune and inflammatory markers. Below is a paragraph was taken from two separate studies on immunity and sex hormones:

Exacerbation of common medical and mental health disorders at specific phases of the menstrual cycle is a prevalent phenomenon. Although the precise cause is unclear, studies implicate complex interactions between the immune and neuroendocrine systems. Females and males differ in the energy consumption and nutritional requirements which are based on the interactions between environmental factors and sex hormones (1). The studies in early 1940s ascertained that females have enhanced capability of producing antibodies (2, 3). This enhanced immune reactivity in females helps mount an effective resistance to infection and therefore females are less susceptible to viral infections, but can develop immune-pathogenic effects and predisposition to autoimmunity due to hyper immune responses.

Separate, but few studies have taken place in the US to determine whether conditions such as fibromyalgia may be related to low oestrogen as it’s a condition that preferentially affects women.

Many women/AFABI with chronic health conditions report increased severity in symptoms around menstruation.

We know that oestrogens affect diseases like cancers and can cause significant disruption to the most bizarre of health issues, including things like dental problems during pregnancy and temporomandibular joint dysfunction. We also know that hormones are a key trigger for many women with migraine. Myself included. I cannot take the combined pill as a treatment for PMDD because of the increased risk of stroke associated with oral oestrogen and migraine with aura. We also know that peri and post menopausal women suffer increased symptoms similar to those mentioned, including joint pain, migraine, frequent viral infections and reoccurring oral health issues, and those associated with syndromes such as fibromyalgia.

Unfortunately at this stage and without hard and steadfast reporting it’s not suggested that HRT is a treatment for any of the aforementioned ailments (besides PMDD.) However, if, like me, you’ve noticed a key link between when your body is experiencing hormonal changes and a decline in your physical well-being, it’s worth tracking your symptoms for at least three months. I use an app called Period Tracker which is available on all app stores and is free to download. It’s easy to use and converts to PDF for easy printing. Tracking your cycle is not only imperative to make connections for symptoms of physical health decline, it’s also as mentioned, a useful tool to predict mood changes, ovulation, and to document any treatments you might try to combat symptoms. The period tracker I’ve mentioned (not aff) also has a prompt for medication which I find really useful particularly during the premenstrual period, when brain fog and memory are affected.

For me and many women like me, it’s not just a period. It’s not just menopause. These hormonal changes are having a profound effect on quality of life and more needs to be done in order to find reliable and safe treatment.

Life after secondary Symphis Pubis Dysfunction.

July 31, 2021 — Leave a comment

For those of you that follow my blog you’ll know that for the last 7 months I’ve been using crutches and a mobility scooter because for the second time in my lifetime I developed Symphis Pubis Dysfunction during pregnancy, rendering me unable to walk unaided.

Symphysis pubis dysfunction (SPD) is a condition that causes excessive movement of the pubic symphysis, either anterior or lateral, as well as associated pain in the legs, hips lower back and groin area, possibly because of a misalignment of the pelvis. Most commonly associated with pregnancy and childbirth, it is diagnosed in approximately 1 in 300 pregnancies, although some estimates of incidence are as high as 1 in 50.

After the birth of my first child my mobility returned almost instantly requiring no further treatment and little associated pain. Professionals tend to believe SPD worsens with each pregnancy and the likelihood of developing it in subsequent pregnancies is extremely high. Many women experience pelvic pain in pregnancy and the severity of SPD varies from person to person, loss of mobility and need for walking aids is generally rare. It’s onset usually occurs in the latter part of pregnancy in the second and third trimesters. For me, I had developed symptoms during both pregnancies, at the end of the first trimester and required crutches by sixteen weeks. In my first pregnancy I needed to use a wheelchair at around 25 weeks and in my second this was sooner, at around 20 weeks. Highlighting to me the very real and tragic reality that society isn’t accessible.

Since giving birth four weeks ago the question on everybody’s lips is ‘can you walk again now?’ And the answer is yes, I am able to walk unaided now, but my symptoms have NOT disappeared, far from it.

I’ve lost a lot of weight in a short space of time and I believe this to have provided significant relief on the pelvic joint, thus I am able to walk a thousand(ish) steps at present, but it’s not without pain. I’m currently unable to walk around holding my son and rocking him and swaying in a standing position is agonising. Same goes for carrying anything, including the car seat, along with bending and sitting for prolonged periods. I spent almost 4 of those 7 months pretty much horizontal in my bed and so getting used to different positions causes increased aches and pains.

I’m so relieved to have some mobility back at all though, as it was suggested I may need crutches postpartum and that would have made life with a newborn and an older child even more challenging. After the first two weeks following birth I started trying to go for walks everyday with my mum or husband. Short walks that lasted around thirty ish minutes, however this seems to have aggravated pain and I’ve had to reduce the amount of exercise again and pace myself. I’m still trying hard to keep moving I just need to be mindful not to overdo it. Some of you will know I also have fibromyalgia and so pacing is important for me anyway.

During pregnancy I was unable to see a physio, constantly being fobbed off with covid being a reason for not treating in person my very real and very debilitating pain. However I do plan to chase them again as soon as I’ve had my postnatal check.

It’s definitely not easy having a newborn and limited mobility, but I’m humble in that I’m able to move around at all after so long without any freedom. I feel positive that with the right strengthening exercises I can increase the time and distance I’m able to walk but whether I’ll ever be able to move like my prenatal self is still an enigma. I’m desperate to get back to the woods and explore with my daughter, but I know uneven ground is a no no at the moment. I’m also not able to carry my son in a sling. The great thing about buggies is they provide a stand in crutch, giving added support, but it’s really important to remember to do simple things like bend your knees when lifting and stretch often etc.

I’m used to being in pain everyday and whilst it’s not fair or fun I do feel extremely grateful. Losing my mobility to the extent I did in my second pregnancy has really made me value my abilities so much more than I ever did before. It’s also opened my eyes to how other disabled people manage (or not) in a world that isn’t designed for us, even things like high stools in restaurants and benches without backs can cause excruciating pain!! Crutches were a constant trigger for flare ups of fibro symptoms, causing fatigue from too much effort lugging about a baby bump on your arms, being unable to participate in days out with my family was soul crushing, and whilst I’m a long way from climbing round soft play or going for a run I’m closer than I was just weeks ago.

My advice to pregnant women experiencing pelvic pain is to act fast, don’t ignore it, keep moving but don’t do anything that hurts and if that means walking, try to exercise seated or led down. Learn to pace and rest often. Take the weight off of the pelvic joint whenever possible. Goes without saying but don’t do any heavy lifting either. DEMAND to speak to a women’s health physio and look up your own safe exercises for pelvic pain in pregnancy. Weightless exercises like swimming are recommended but be careful of over doing it with the legs.

Something I didn’t do but would also recommend, is try and keep within a healthy weight, it’s nearly impossible when you can’t move around but the extra weight causes more strain on those joints.

Life after SPD isn’t the same as life before but it’s better than life in the peak of it. The world needs more awareness about the impact pregnancy can have on our health and information about how to lessen that impact going forward.

To my friends (and family) who don’t have fibromyalgia.

April 20, 2021 — 4 Comments

Hey,

Thanks for being you, for listening, watching, reading and learning about my condition whilst riding this wave with me. I know it’s been years now. I know it ‘gets old’ boring even, to hear me talk about it ALL. THE. TIME. Part of me is sorry, though I’m not sure I’ll ever stop, because the thing is…. I’ll always have this condition now.

A few people have dropped off along the way, stopped asking, stopped listening, stopped sympathising, I’m learning to be ok with that. I have to be. Yes it hurts my feelings, even when I don’t tell you it does, and when I do.

It hurts my feelings when you ignore the honesty of my illness related posts, and only engage in the cute pictures of my kid. It hurts my feelings when you ask me how I am and I’m honest about how I’ve been feeling and you don’t reply. But, I do think about how hard it is to be around me sometimes, how difficult it can be to know what to say. With that in mind, I’m grateful if you’re still here, even when it might seem like I’m not grateful for anything.

You see, this illness makes me irritable, I get angry with my body, often. On some days, better days I might seem totally ‘normal’ I might even resemble ‘the old me’ but please know, that I am never not thinking about how this illness impacts my life. I am never not considering how activities like having fun with you today, might affect me tomorrow or days later, for days, sometimes weeks after the event.

I still want to do all of the fun things you suggest and sometimes I’m able to, but there will be days when I need to cancel last minute. There will be times when we are out together that you might roll your eyes because I can’t walk back up the hill we just descended, or I can’t come and dance with you when our song comes on. I’m rolling my eyes at me too. I’m annoyed at my body too. What I can promise you, I’m not doing though, is faking it. There is never a time that I want sympathy more than I want to have fun. Believe me when I tell you that, because it’s important you understand, this illness is real. It’s also interchangeable, it’s sporadic. It could be down to the last minute that I am living it up and having the best time then crashing in bed for days afterwards. This is partly why I’ve pulled back from making plans. Pulled back from committing to things. This is why I’ve not reached out to ask if you want to do anything for ages, because I fear that if I do, and then I become suddenly unable, that you will think I’m flakey. You might start to resent me, and drop off the radar with the rest of the people that couldn’t fix me.

I am not broken, not entirely, I’m just bent, learning to live again (almost a quote from a P!nk song there) Please know that I still want to be included in your plans and I still want to include you in mine. I just can’t assure you I’ll always be able to fulfil them. Just know, when I make them, it’s always with the best intentions. I’m trying, all the time, new ways to manage this condition. I’m always trying, to be better, to do better, to make better choices that will benefit me and ultimately our relationship in the long run, even when you might not think I am.

I wish I could go back in time and do more things with you before I got sick, but sadly time travelling isn’t a side effect of chronic illness. Though it’s hard for you to see me like this, though I’m hard to be around sometimes, I am a better, more compassionate and caring friend because of my illness. Of that, I am certain.

If in the past I’ve rolled my eyes at your struggles, I’m truly sorry. If I seem lacking or caught up in my own life, I’m sorry for that too, because I do care. I don’t have all the answers, I don’t have all the solutions – but I still care. More compassionately and with more integrity than I’ve ever cared before.

If you’re still here – thank you and if you’re not, I understand. Letting go is something I’ve had to get used to, and it’s something I’m trying to do without resentment. We all have to look after ourselves and sometimes that includes making changes and protecting ourselves from negativity, including negative people, and whilst I do feel like I am a good and loyal friend, I’m fully aware I’m not always a positive one. Like life itself – It’s a work in progress. And I’m forever trying to be better than I was yesterday.

Love, me X

Call for NICE to play nice with chronic pain sufferers!

April 8, 2021 — 4 Comments

For full transparency here is the article NICE published in relation to using alternative methods to treat chronic primary pain that has no known cause. NICE recommends

For the most part this starts well, offering people a range of alternative treatments in place of a prescription doesn’t sound so bad does it?

The issues here though, are plenty if you do in fact live with chronic pain. Many sufferers will have a) already tried alternative treatment options. Or b) Are still awaiting a diagnosis in the first place.

We know the opioid crisis is real, we know there’s a risk of addiction and dependency, most of us would give anything for adequate relief found elsewhere, but opiates aren’t the only treatment option available that’s in dispute here. Standard analgesics such as paracetamol and Non Steroidal Anti Inflammatory Drugs are also being branded ineffectual. What is particularly damaging is the statement from Dr Crisp that suggests pain relief doesn’t work to treat chronic pain, and antidepressants do.

“This guideline is very clear in highlighting that, based on the evidence, for most people it’s unlikely that any drug treatments for chronic primary pain, other than antidepressants, provide an adequate balance between any benefits they might provide and the risks associated with them”

I’ve come to know many chronic pain sufferers that are indeed already prescribed antidepressants as an addition to pain relief for chronic pain. I’m yet to know any that find these effective in place of further treatment. I also know many people who benefit from holistic therapies and exercise and diet for pain management. The problem here is the assumption that everyone or nobody benefits from one type of treatment. NICE make some very encouraging points in the idea that collaborative discussion with patients will play a role in deciding treatment, sadly what it then does is states pain relief won’t be offered initially, leaving many people awaiting a diagnosis in agony.

If you’ve suffered chronic pain ongoing and for a long period it’s likely you will be hoping for a diagnosis. NICE addresses here that the prognosis isn’t always simple and a true diagnosis other than pain itself can be hard to find on occasion. Another of my issues with this statement is, people who are seeking diagnosis will be further fobbed off and advised their pain has no known cause without a full and thorough investigation being carried out. It also indicates that addiction to painkillers is commonplace, as opposed to people taking them in order to function and live a more fulfilling life.

Furthermore suggesting antidepressants come without similar risk or harm is also damaging. I have taken antidepressants and opiate pain medication on and off for twenty years, I’ve experienced withdrawal for both and I personally found antidepressant withdrawal a much more hellish experience, that said I don’t speak for everyone and I’m fully in support of medication being commonplace to treat mental health issues. What I’d also like is to not be branded or implied an addict for taking medication to treat pain.

I don’t dispute that alternative options to medication should be commonplace. My fear is the removal of treatment or the lack of prescribing in the first instance will lead to untold suffering and the search for pain relief elsewhere. Potentially from illegal drugs and under researched off label medications. You only have to look at Twitter to see the outrage from people in the chronically ill community to understand that this will impact us significantly.

As a mother and an expectant one it would be idealistic to not have a need for medication at all, but I like many other sufferers have tried countless attempts at reduction and abstinence. It doesn’t work, because my pain is physical and it’s real. To suggest psychological therapies in place of a prescription is another way of suggesting our pain is psychosomatic and not physical. Yet upon first analysis you couldn’t possibly know that to be the case. I don’t disagree that better information needs to be given as standard, that alternative medicine should be available on the NHS as standard and that exercise and diet are all impacting factors. I do however, disagree with the statement suggesting pain relief doesn’t work for chronic pain. Granted it won’t work for everyone, and granted NICE have advised individual plans will be made, but how many of us already feel judged on how we manage our health? I know I do, and I know hundreds of other people that do too. What would have been really nice is for NICE to include alternative therapies as standard without pillshaming people already taking medication or those seeking adequate investigations and subsequent pain relief.

Yes I have launched a petition and yes I have indeed read the guidance offered and I still feel strongly for the need for this advice to be overhauled and at the very least reworded in a more sensitive and less ableist fashion.

Not everyone can exercise. Not everyone can access alternative health care and not everyone will become an addict when treating their pain with painkillers even long term.

The petition is currently in review and will be shared when and if it goes live. I’ve also emailed NICE directly for clarification and I hope they are able to address the concerns of those of us that have voiced them.

I also feel the need to state: I am not suggesting everyone take pain medication for the rest of their lives to treat chronic and ongoing pain, I’m simply asking that we don’t have the option taken away from us.

I think I’m failing but my kid still thinks I’m a superhero 🦸🏽‍♀️

March 4, 2021 — Leave a comment

It’s no secret that during pregnancy your hormones are all over the shop, one minute you’re chomping on cheese on toast and the next your crying into your cottage pie that your friend drove 25 miles to deliver. It’s a funny old game this growing a human malarkey.

Because my health has been on a steady decline since my daughter was born, this pregnancy though a lot like hers, has been overshadowed with worry and feeling unwell constantly. When I say constantly I mean it. It’s either not being able to walk, migraines, sickness, feeling faint, high blood pressure and the rest, it’s been bad, and not fun. Also those people who said you never get two the same, you were wrong.

That said the guilt of ‘wasting’ days in bed in an attempt to make the next one better and unable to do all of the things I want with my family has had a negative impact on my emotions. Team this with hormones and you have me, an unstable, anxious, dribbling mess.

This week said emotions have been on overdrive and I’ve spent countless hours in tears, I’m surprised there were any left after the first ten or so. My husband has looked at me with puppy dog eyes and a need to fix my broken spirit and my daughter has looked at me with longing and frustration. I haven’t been able to meet their demands, particularly those of the little person. She doesn’t get why mummy is always in bed and at one point I was worried she was going off the idea of having a brother because he’s been making her mum so poorly. It all hit a crescendo on Tuesday when Ciara wanted 5 things at once and I couldn’t even give her the simplest one, which was turn the volume up on the TV. I couldn’t do it because the bastard NowTV remote is a dodgy little fucker and it just would not work. Off she stomped whilst moaning at the dog and calling for her dad to come and fix the problem that mummy was incapable of rectifying.

Once I heard her footsteps on the stairs I burst into a fit of hysterics, threw the remote which bounced off the bed and smashed a photo on the bedroom wall. It wasn’t my finest moment because I couldn’t even roll myself off to pick up the glass before Shaun bursts in asking me WTF I was doing!?

Picture it, 5 month pregnant woman whose legs don’t work, rolling around on the bed with no bra on and crying inconsolably. It’s not a pretty image is it?

I don’t want to do this anymore I wailed, like an actual whale. To his credit, Shaun turns the tv off and shouts down to Ciara that they’re going to watch tele downstairs instead. I didn’t see them again that evening because I cried myself to sleep and woke up at 10pm and waddled into her room to give her a kiss goodnight, something I abhor to miss.

The next day I’m feeling full of shame and still in pain wondering how I’m going to get through the days for the next 4 months. But I needn’t of worried about the rest of the family because like clockwork they traipse in from school and work with smiles and cuddles for me and chat shit about their days as if the previous ones have been erased.

Ciara was pleased that I had finished colouring in her tiger costume with a sharpie for world book day and asked if she could come and snuggle in my bed.

This morning I got up at 7 after being awake from 2am with possibly the worst nerve pain ever. I say this because I can’t treat flare ups in the same way I would when I’m not pregnant ie with heavy drugs. The pain relief I’m taking at the moment just isn’t working to the same effect. Anyway up I get and by ‘up’ I mean sit up in my bed and paint my beautiful daughter’s face and send her off to school with a smile.

It doesn’t matter that I collapsed back in bed after and slept until lunchtime, because she was happy. When she got home she found me asleep in the bath because it’s the only place I don’t feel like my body is on fire and she poked me to tell me about her day. Including poo gate by another kid in class which we all found highly amusing.

I do feel like I’m failing life on the reg at the moment and somedays I can’t get on top of those crazy emotions and pretend I’m bossing it, because I’m not. But what I do know, with absolute clarity is that when it comes to my kids my best is good enough, and the need to be moving all the time and trying harder is born out of my own insecurities, not those of my five year old. She loves me on all of the days, even the really shitty ones. She loves me for all of the things I can do, not all of the things I can’t.

Migraine – not just a headache

December 28, 2020 — Leave a comment

I have started writing this so many times. It’s a so hard to put into words the debility of a migraine, without it sounding like a bad headache. So I thought long and hard about how I would explain migraines in this blog. I really wanted you to be able to feel what I’m trying to say, so here goes.

It may start off fleeting, a small dot in your peripheral vision, a barely noticeable shadow that casts a darkness over tired eyes. Maybe it’s more aggressive with flashing lights, and in some cases temporary loss of vision. You might feel a sickening in the pit of your stomach, coming from nowhere and catching you unawares, making your mouth water. You may be struck down by overwhelming fatigue that leaves your body feeling laden as though immersed in treacle. Or maybe your jaw starts to hurt from clenching. Maybe you have a pain deep set behind your eye that trails up over your skull and down your neck. Maybe your period is due, maybe it isn’t. Maybe you ate cheese, forgetting it’s a possible trigger, or maybe you didn’t.

You take yourself off to bed with the view to recover within hours. Painkillers line your bedside table and you take each one in turn at the first sign of the migraine. You lie down, dizzy and unable to sleep from the pain which has now gotten so bad that all light and noise must be eradicated immediately. An ice pack lies across your forehead not quite reaching the parts that are pained. A few hours pass and you wake up, rush to the loo to be sick, or sit up and be so dizzy you need to lay back down. You’re shaking, you feel like you’re hungover from 10 JD & Cokes accept even a hangover from 10 JD and cokes would be preferable to this shit show of pain you’re feeling. You are unable to distract yourself. The only thing to do is lie there some more, phone in sick, cancel any plans you made by forcing yourself to pick up your phone even though it hurts your eyes as much as looking at direct sunlight. Rattle off a text of apologies for having to cancel again, only to get one back saying ‘you wouldn’t be on your phone if you had a real migraine, it must just be a bad headache.’

The day passes in a blur, you cannot eat, you cannot sleep, you cannot watch TV or read, and you genuinely wonder how much more of this you can take. What if it never ends? What if today is the day you don’t recover from this pain and have to live with it indefinitely? You feel shaky, your skin is greasy, and your heart rate has sped up to a rapid crescendo. Anxiety causing the pain in your head to worsen again. That hangover feeling leaves you exhausted, thirsty and drained, so drained. Your stomach feels as though you’re sea sick and the thought of leaving the house is too much effort.

Your doctor advised preventative migraine treatment, so you take 4 pills every night of your life in hope that it will prevent the migraine occurring at all. You get a piercing that promises a quick fix and for a month or so your migraines reduce, but they are not gone. Oh no, they are never gone. When you’re tired, when your period is due, when you drink too much caffeine and also when you don’t drink enough. If you miss a dose of those sacred pills. Just about anything can be a trigger to be honest and you wish fleetingly that someone else would feel this pain so they could understand it. It’s impact. The catalogue of symptoms that are so disabling, so soul crushing, so unpredictable, and so much more, than just a headache.

You can also read this blog here on The Mighty Site

Just another chronic illness blog

December 21, 2019 — 2 Comments

When I got diagnosed with a chronic illness I didn’t get the same quota that you get when you’re told you have pneumonia or you break your leg. I didn’t get ‘get well soon’ cards or flowers – which I guess is a good thing as get well soon doesn’t really exist in the chronically ill community. But we still appreciate the sentiments.

I don’t get much love for my illness, I get eye rolls and people annoyed at me talking about it again, but I don’t get much love.

I get people accusing me of using it as an excuse and comparing me to people with the same problems. But not love.

I get disbelieving shakes of the head and funny looks when pulling into a disabled parking space, but not love.

I get people telling me to be positive and exercise more but I don’t get presents or hugs.

Imagine waking up one day and not being able to get out of bed, yesterday you could of ran for the bus, but today you can’t move. Now imagine feeling too ashamed to talk about it for fear of being dismissed, accused of faking, or mocked. Because that’s what living with chronic illness is. That’s what happens when people can’t see your pain. They assume it doesn’t exist or that you’re making it out to be much worse than it is.

Even your friends think you’re exaggerating, and even your family get fed up when it encroaches on plans with them yet again. When I tell people I have to pace myself or I’m not feeling too good, I literally brace myself for their reaction. Nobody ever says, it must be so hard, I admire your strength.

That’s why I write it down, and that’s why I share it on the internet with people whom I’ve never met. Because some of those people get it and they aren’t (at least not visibly) rolling their eyes at yet another post. People are happy to offer you their support for the occasional bout of misfortune, but when it‘s ongoing nobody wants to get dragged down with it. I get it! I really do, I’m a realist, I know it’s hard for people to understand, and it can be miserable to hear about, but imagine living with it.

Imagine just for a minute that it’s you who’s sick all the time. Then imagine feeling like nobody cares. Feeling like you’re burdening people whenever you talk about it, feeling guilty for being sick, imagine how lonely that gets.

Everyone has their own battles and some people have it much worse than you or I, that’s a fact. Some people have the same illness on a different level and some people have diseases that are killing them.

What living with a chronic illness has taught me is not to make assumptions on people’s lives, to believe people when they tell you they’re suffering, and to remember to check in on your friends. Pain changes people, in different ways, sometimes it’s empowering and when you’re on top of it you feel like you’re winning, other times it’s dark and makes you wonder what’s the point of living at all if this is how you’re destined to feel everyday. It’s overwhelming and hard to explain – but by sharing my experiences with it I’m remaining sane. I’m not hiding and so that is the reason behind yet another chronic illness post. If you know, you know. 💜

View this post published on The Mighty here.

https://themighty.com/2020/01/when-people-cant-see-your-chronic-illness/?utm_source=engagement_bar&utm_medium=link&utm_campaign=story_page.engagement_bar/