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‘Dear Unbeliever’ :what I would say to the fibromyalgia doubters

Photo by Mnxan Opena
Photo by Mnxan Opena

In the immediate years following my diagnosis with fibromyalgia (fms) I struggled tremendously with people’s disbelief and confusion over my pain.

That people couldn’t comprehend that a person could look perfectly well on the outside while going through a raging storm of pain, incredible exhaustion and other symptoms baffled me. The lack of comprehension wouldn’t have been so bad if it wasn’t often followed with judgements and suggestions of how I could shake off my pain with positive thinking, meditation and the host of never-ending recommendations.

I was still coming to terms with my diagnosis, learning how to navigate life with a chronic pain condition and this was complicated by the need I felt to validate my suffering to others who didn’t seem to believe (doctors included). Looking back I wish I had been firmer, braver and bolder. Here are some of the things I wished I had said.

Dear Unbeliever,

Just because you cannot see my pain, that doesn’t make it a figment of my imagination, or a product of negative thinking. Many conditions that afflict people nowadays are invisible, showing few outwardly signs of something wrong. Invisible pain is real too.

Just because I look well on the outside, doesn’t mean that everything is fine on the inside. Just because I smile through my pain, my debilitating exhaustion, migraines, cognitive impairments, multiple chemical sensitivity etcetera doesn’t mean I’m not reeling internally.

If you don’t understand how it is a condition like fibromyalgia can cause so much havoc in a person’s life, all while we look well on the outside, that’s fine. Totally fine, but you should note that your mere incomprehension doesn’t render facts falsehoods, or truths, lies. You don’t have to understand to support someone else who is hurting. How can you come to understand if you’re not even willing to listen? At least try to listen.

I know that not many people know about fibromyalgia or understand how it causes increased sensitivity to pain. So I get the disbelief over my saying ‘ouch’ when I was poked. Fibromyalgia appears a condition of contradictions. It’s like all the stuff we know about our bodies, well, scratch that, if you have fms, the rules change. What works for a healthy person doesn’t always work for an fms patient. So yes being poked hurts. Tickles hurt. Sometimes I hurt myself when trying to relieve an itch on my back for instance.

And I really was very unwell when I couldn’t make it to your parties, even if I looked ‘well’ as you say.

Validation

I know some of this sounds very odd, but that is just what we live with. You might not know but that’s why I try to explain. Still I faced persistent talks about how going to the gym would be sure to help, when in fact the kind of exercise you insisted on left me flattened in bed for days wincing from pain; I was pushed to walk/jog at a time when taking a few steps was so agonizingly painful my doctor lined me up for steroid injections (yes under the sole of my feet – I’m getting the chills from just thinking about it).

I was wrong to spend my time trying to validate my pain to you, to try to make you believe, make you see how I’ve been suffering. Because the time I spent doing that, was time that I could have spent trying to work on managing my symptoms.

The point is, by judging (and misjudging) people in pain, you are actually making life harder for us. You are creating more hurdles that get in the way of people accessing the help they need. Living with an invisible disability is tough as it is.

Stubborn people who choose to be critical of other people’s pain and suffering often remain so, until the shoe is on the other foot. Unbelievers often see the light when they are suddenly faced with similar circumstances, only to discover that ears, hearts and minds close off to them too.  Kind of like poetic justice, but I’ll just leave that right there. I think you get the point.

Never judge someone else for what you don’t understand or believe. You never know when you will end up in a situation that lands you right at the centre of other people’s judgements.

Sincerely,

Alisha

P.S unless you are willing to listen and try to understand, you have no right to criticise me for the meds I am willing to take in order to have some quality of life.

Gentle Hugs x

potofcallaloo
Alisha Nurse is a curry-loving writer & comms professional who holds a Master of Arts Degree in Journalism (International) from the University of Westminster, London. Get in touch with any feedback or questions via the contact form in the 'About' section.

23 thoughts on “‘Dear Unbeliever’ :what I would say to the fibromyalgia doubters

  1. Hey Alisha,
    I was diagnosed with fms just this summer, after years of hearing things like I wasn’t just being active, I was making excuses, I was pitying myself, I was being pessimistic. Even the doctor making the initial diagnosis laughed at me and told fms was psychological and would go away if I would be a bit positive and active. I got my second diagnosis from another doctor who was nicer two weeks ago and will now begin with physiotherapy. But deep down, I was feeling so guilty that “it was my fault” I burst into tears while reading your post.
    Thanks for writing this honest.
    I just found your blog and I will be reading it from now on.
    Best regards,
    Kitty

    1. Hey Kitty,
      I truly empathise with you. I dont think people realise the distress they cause us when they doubt our experiences of fms.
      I’m glad that you found a nicer doctor and my blog. I find it helpful to join a fibro support group even if it’s online. There are a number of those on Facebook. Feel free to let me know how you’re getting on, or if you have a question or need support😉
      Love Alisha

  2. Thanks for saying what some of us are unable to put into words. I’m back on the map, and know I must write to let out emotions that drive me crazy. Although TBI makes it hard, I reply on others to get my thought process going. I realized, the other day, I have lost (wasted, I feel) The years of my 40’s and 50’s. In my late 50’s, that’s a lot of time. And wasting time on unbelievers is a REAL waste if time. Even though there are no family members standing by to give us positive support any more, I am coming to terms with this. After a severe breakdown, my compassionate Neurologist asked “what will you do to handle this”? Try to talk to my daughter if and when she will. I miss her so much, and these are years we can never relive. My fear is if something happens to me….how can she handle this and not sink into s total despair? Sometimes I wonder if I should write a letter of mercy, just in case. My dear, close extended family is obsolete. After my parents died years ago, the glue hardened. They would be horrified. I will honor them by keeping the right spirit, and they would understand the grief. I weep for all of us trying to be honorable while dodging the stones. Thanks for your candidness….someday, I won’t be afraid to be brave like you! In my “menu” I tell what I’m struggling with, and Fibro is a big one! Keep working, my young friend, you have time to make a good life through your struggles.
    A co-fighter, Cathy

    1. Wow Cathy, first of all I am so glad to hear from you! I’m in the office atm and I want to reply properly so will do later when I’m home. Please stay strong and thank you for your encouragement my friend. Chat later, hugs Alisha xxx

    2. Hi Cathy,
      I have to say again how glad I am to hear from you. I am sorry that you have been having such a hard time. Life can full of so many downs- really makes us appreciate the good moments when they come, however few.
      I think you should definitely reach out to your daughter. The important thing is that you reach out, and let her know you are open and miss her. Even if she doesn’t respond, you did your part and that’s all you can do.
      Sometimes family members hold grudges for a long time- it’s the case in my own family and I am trying to help heal some rifts that have gone on for so many years, passed down from parents to children, so much so that some of us can’t even remember how it started to begin with. It all seems silly in the grand scheme of things. We are here today but we never know when our time will come. And recently with all the attacks happening around the world and London on high alert I have been thinking too, what if today was my last day and I didn’t know? I think we should all live each day as if it is our last.
      Do you have any close friends who support you? I have found family in friends too- they are the most supportive people I’ve ever had in my life – not many but I so cherish them. And if you ever need an ear or a friend, I am here, never hesitate to get in touch. You can email me privately if you like as well and we can skype, whatever you like. I know what it’s like to feel alone.
      I am sometimes afraid too when I write posts Cathy. Recently someone who was bullying called me ‘mentally ill’ and laughed. People can be so mean. But you know what? I told myself unless people like us speak out, nothing will change. I have bee going through a rough time too but working hard to try and make what I can better.
      Remember you have friends ok? be strong and of good courage:) Love Alisha x
      PS
      I almost forgot to say- I am sorry that you feel that your previous years were wasted. I sometimes feel like that. We can never get time back but we can always endeavour to make the present count. It’s not too late to start again. I’m rooting for you! x

      1. Thanks…. I really didn’t expect you to write back , but the nicest people are “sick”. Lol. I ‘ve done my best with my daughter, and she is a perfect mother and wife! And I’m never ashamed to tell her. She is having her 7th child in February and knows I’m shopping on line at the Gap, etc… I pretend to be “dumb” and act as if all is well, while my heart is breaking. Their children are so well behaved and we loved having them spend the night the first of December. I never know when it will be my last and she knows it. So I do all I can to keep her from having too many regrets. She misses me terribly as I haven’t been able to help after baby # 3. That must be so hard for her. I know she aches and has gotten involved with many who can take her mind off of me. While I’m glad, you can imagine how it feels to lose the one who told you her secrets, her fears, etc… I told her I was doing all I could to be well by Feb. so I could stay and help with things after the baby. She hasn’t said anything, and I’ll not mention until she’s had time to think . She lives an hour away, so it’s not bad. I couldn’t do much in reaching out as I was in limbo so long after the mistake the doctor made. I’m still dealing with issues that keep me close to home. I don’t share a lot with my kids, as children don’t do as well early in the game of caring for their parents…. At least in our culture! I don’t want to burden, yet I don’t want them shocked. What a fine line. I wish we didn’t have those worries, and feel bad for my husband. But he’s a trouper…38 years on Dec 20! I miss my family and everyone has their head in the sand. I’ve apologized to them for anything I’ve done, but they just say “why we aren’t upset”. I’d hate to see them if they were!lol. I’m at a loss with them, as I’ve tried everything with my older sis. She is ill and probably has her fears. But I am not allowed to sympathize, have empathy…. Etc. “we are handling this very positive” is her answer… Which means ignoring it. One must grieve to release, but she doesn’t like that. Could be why she’s had high blood pressure all her life! Hahaha. It’s hard to love…one will be stung, you just never expect it from those close to you. Good for you! I hope you will keep me posted on how things go with your family. Beyond belief, isn’t it? My dear mother would not leave the bedside of her sis in law, who made her life miserable with rumors. Never held it against her. Kindness isn’t hard if we have love in our heart! It’s beyond me! I dedicated my site to a dear friend and had a few that stood by when things were rough. They all have grandchildren and I wouldn’t take any time away from them. So I lie! Haha. And they know it. It’s hard for me to talk… TBI and some aphasia, but the trauma keeps words stuck in my throat! Please tell me you don’t have that problem. It’s awful and kills me when I know other are struggling too. I wish I didn’t feel deeply for others, it would make life easier, but I would be more miserable..just like I see others are miserable. You are the same….or you wouldn’t reach out, and you certainly wouldn’t encourage me too either. Wishing you the best…and have enjoyed connecting with your blog again. I’m long winded on mine, but when I have thought going, I don’t stop! 🙂 Cathy.

        1. Oh Cathy,
          It’s such a delight reading your message!
          Wow, that’s a big family your daughter has. I really love big families. I grew up in an extended one where cousins were brothers and sisters, aunts and uncles, just extra moms and dads lol. But life today, people are so consumed with their own happenings to even bother with their neighbor (family). It hurts alot and I experienced it first-hand. In some ways it is easier for me to live in a foreign country alone than be in my home country with all my family because at least here I know I have to care for myself as I have no one to lean on. It was harder at home not having support with so much fmaily around.
          It sounds like you’ve done your best with your daughter. I really hope that she comes around soon.
          I guess I dont understand cultures where children don’t care for parents. In Trinidad and Tobago where I’m from and the wider Caribbean we take care of our older family members. Even when someone goes abroad, they work to send money home. The concept of homes for older people are still foreign to us. i grew up in the same house with my grandparents and even slept in the same bed with my Ma until I left the country at 21 to study abroad!
          About your sis, lol you could be onto something on why she has high blood pressure! I cannot deal with issues by ignoring them and it’s a pet peeve of mine. Handling something isn’t the same as ignoring it. It’s just internalising it.
          I’m sorry that expressing yourself can be challenging. I often feel that way with verbal words. But I feel I tend to get better with practise. Then if I don’t speak to people face-to-face fo a while, I become rusty and it’s the as me with writing. Just practise and be disciplined and it may come easier.
          You are spot-on re your statement on kindness. I often wished I wasn’t so soft. but you know what? suffering makes us more empathetic towards others. And this is a key quality that our human race is lacking more and more of. If we could empathise, it would mean fewer quarrels, misunderstandings and probably even wars. Alot of our problems come from us not being able to connect with our fellow-man.
          You don’t have to pretend or lie with me, just shoot me an email or msg if you’re blue and I’ll be there:) xxx

        2. Hey Cathy,
          I started writing a reply to your last comment but somehow lost it! I feel a bit out of it, so I’m not surprised my messages are disappearing!
          I had to go to hospital yesterday- woke with such excruciating pain in neck and back I could not sit up or turn over. When I did eventually, I cried so much from the pain. Doc said he doesn’t know what triggered it but something happened to muscle in neck, affecting others in back, and gave me some new stronger painkillers.

          Thanks so much for sharing with me! This is something humanity has been lacking in. We dont connect enough with others so we dont learn to empathise. but when I was growing up in Trinidad, there was a saying that ‘no man is an island.’ You sound like you enjoyed the Caribbean alot. It is so beautiful, it’s just such a pity we struggle to get a grip on the many social problems we face, including crime.

          And yes we also believe in herbal medicines. Alot of this is passed down from generation to generation but there is always someone else who knows of a remedy you’ve not heard of! Always heard that the beach was healing. When I was really ill, dad would say ‘you need to go down to the sea and have a bath there.’ I totally agree with you. Our diets impact on our health so much, and I really feel alot of the symptoms we face nowadays could be alleviated if we just ate more fresh produce. The trouble is , even the so called fresh food is full of chemicals unless you buy organic (and who knows if it really is) which costs an arm and a leg.

          I know Im forgetting to mention some things, but hard to recall without your last comment to see. Thanks for all your kind words too! Hope you have a great week! Be strong my lovely:) xxxx

          1. Hope you’re feeling better and that you’ve not had to go visit the hospital again! They like visitors but they’re not very fun to visit! Do you ever mention these things to your family? I suppose for some a little headache is a ridiculous thing to go to the hospital for. Oh well we’re just demented women! Cathy

          2. Hey Cathy! I had to go to hospital Sunday cuz I couldn’t cope with excruciating pains in my neck, travelling to my back for some days. It was so crippling I couldn’t sit up without shedding tears! I feel much better with strong painkillers I was given thanks.
            I tell my family sometimes but mostly keep it to myself unless Im mentioning it to friends who respond more closely to how I guess I’d like someone to respond, and how I would respond if a loved one was telling me.
            How has your week been my friend? sending you hugs.Oh and how is your holiday shaping up? it’s a tough time of year for many people now x

          3. Curcumin is part of my pain program! I’m surprised at how good it does for new! And it’s and anti inflammatory also! I am shocked at how much we bear….

          4. Hey Cathy, sometimes when I get really ill I forget all the things that really help. I keep fresh turmeric root in the freezer for making tea and cooking with (main ingredient curcumin) and it really does help. Prob is when I was in so much pain I could do little to help myself, but now that you’ve reminded me I’m making a pot of tea first thing tomorrow! and true! we have very high pain thresholds. Shocking, I dont think the average person can deal with what we cope with on a daily basis!

  3. I have a pain pump as you know…. and I am able to give myself “boosts” when needed. Once my doctor asked me why I didn’t give myself boost when the pain got bad. I was ashamed to say “I forget, and I don’t know why, I’m just used to the pain.” To my surprise he said that most Chronic Pain patients say the same thing. They get “used” to being in terrible pain, and it doesn’t click with them to do anything until they are way out of control. That made me feel better!~ And you…. I don’t know how you do it alone. How can you think of everything? Maybe on a good day, you’ll have to make a cheat sheet! But what good is that, when you have no energy to get up and do! I’m so sorry. Wonder if you qualify for home care when the days are bad? It’s amazing what we can have that we aren’t aware of. And vice versa! 🙂 Take care…. PS. I’ve found that reflexology is many times cheaper, yet just as effective in helping pain. Massages can get expensive. Groupons, Living Social, etc… are the way to go on a limited budget!

    1. Thanks Cathy:) I will make of these suggestions for future:) I’m not familiar with pain pump but going to google now:) Not surprised that other chronic pain sufferers struggle the same. I think we all have a history of having to wait years before getting diagnosed then proper help so we have gotten used to it. Ever so often it still shocks and upsets me when I meet doctors who say ‘we cannot cure you’ as I heard sometime earlier this year. We dont expect a cure, just the tools we need to manage. I was referred to a programme for people in chronic pain but can’t go because I just got a new job and Ive been looking for over a year. Time off isn’t really feasible at the moment and if I can get it I’ll have to choose between that and other kind of therapy for other symptoms!
      When my days are bad, it shows. I’m often delirious from pain, I tend to miss my four alarms, alot slower and more forgetful and likely to be running late with everything. Thats a great idea- I am going to create that cheat sheet (God knows it can be helpful!) thanks Cathy! It’s so good to be able to talk to you! chat soon:) xxx

  4. Hello, Alisha. This post is over a year old, so I hope that by now you have discovered the benefits of Low Dose Naltrexone. The dosing is VERY, VERY tricky (“too much” is as bad or worse than “not enough”, and the optimum dose varies from person to person) so I highly recommend you join a related facebook group to guide you, should you try it.

    1. Thanks so much Vicky. My pain levels are much better but fibromyalgia flares up when my mood is low as it is now. I’ve not tried Naltrexone – my GP now has me again on a low dose of Amitryptiline. I think it helps but I don’t take it as often. I will definitely look into it. Thanks so much for telling me about it. How are you friend? x

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