Are you really sick?

More and more I am noticing that people sometimes dismiss my fibromyalgia and don’t believe that I am actually ill. It can be frustrating, especially as I am trying my best to be well – yet when I am ‘being well’ it seems difficult for people to believe that I am sick at all.

Here are three examples:

But you do loads of exercise, how can you be in pain or tired?

I don’t know about loads because I’d like to do more, but yeah, I walk for an hour every day, I do stretching and yoga daily and 3 times a week I do some form of aerobic exercise. I have also started doing some virtual races (although I will be walking not running them). Am I in pain and tired? Hell yes. I have to listen to my body to ensure I am in a position both physically and mentally to exercise, I have to manage my heart rate so that I don’t burn out and I have to push myself past hip, knee and leg pain every time. It’s mind over matter and very hard to keep up consistently, but I do it because I know that it aids my recovery and improves my weight and physical fitness levels, making fibromyalgia easier to manage day to day.

But you don’t take that much medication, so you can’t be that sick!

I take a number of supplements specifically recommended for me and my condition:

  • Lamberts Turmeric 10,000 mg
  • Lamberts Acidophilus Extra 10
  • Lamberts Multi-Guard ADR x 2
  • Holland & Barrett Omega 3 Fish Oil Capsules 1200mg x 2

In addition, I take 2 medications on prescription:

  • Amitriptyline 50mg
  • Ramipril 1.25mg

That’s just 8 pills a day, or 56 pills a week. Plenty thank you very much. I do not take regular pain medication, not because I am not in pain, but because I prefer to find alternative ways to relieve pain such as TENS machine, heat pads, meditation, hot baths and so on. Does that make my pain any less real? Does that make my pain mild? No, it just means I am finding long-term ways to deal with my condition.

But you work full-time, you must have very mild fibro to hold down a full-time job!

Yes, I do have a full-time job, I work as a technical writer. I also do voluntary work for The Cinnamon Trust and the ISTC. I am also a mum to a very lively and equally busy 10-year-old]. How do I do it and have fibromyalgia?  Well mostly because my full-time job is home based, which means I do not have to commute daily (which is the thing I find the hardest) and it also means I don’t have to spend an hour getting myself ready for being out in public.

Could I work full-time in an office? Probably not. I adapted my career around fibromyalgia. I had to get out of the stressful career I was in and move into something less stressful and more flexible. I used to be a further education teacher, teaching unemployed adults maths, English and IT and it was hard damn work on my feet all day and managing large classrooms. Yes, I work full-time, but I have had to change a hell of a lot about my working environment and situation to make it work for me with fibro.

Do you find people dismissive of your fibro, just because you are up and doing instead of wallowing in your condition? Do you feel upset when someone suggests that your fibro is mild or not as bad as theirs when all you are doing is getting with life with as much gusto as possible?

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4 Comments

  1. Brittany W

    It is so frustrating when people dismiss your illness because you’re not sick enough. People assume I’m not actually that ill because I’m a mom, or because I travel for work.

  2. All the time, people dismiss my chronic illness’s, even some who have similar conditions. Why, because i choose to walk my dogs every day. I do Tai Chi, and going to start walking in the pool again. I also love to travel and write on my blog about traveling. A lot of people expect me/us to lay in bed or the couch all the time. Some days I have to. Its not an option. I listen to my body, I do take some pain killers but I am on a low dose. I want to live and see and do and if that means I will do all of that in Pain then so be it.

  3. Kat

    I am so sorry people dismiss your illness because of your attempts to live a life to the fullest of your personal potential. I haven’t had too many people dismiss my chronic illnesses yet, but probably because a lot of them don’t know I have them! I work 3/4 time, and when I’m around people I’m very good at being “on” for a few hours at a time. they have no idea how much it knocks me out afterwards!

    I am proud of you for your exercise and supplement regimine. Working onto getting into one of my own.

  4. I have come across the same misplaced ideas. I can relate to nearly all of what you say. Just keep plugging away. The misconception won’t go away but you will find easier ways to explain. Keep fighting Helen

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