How do you deal with other peoples perception of your chronic illness?

So I was thinking today about issues I've had with people over my Fibromyalgia, after watching an amazing video on how to deal with naysayers on www.chronicbabe.com.  She's a pretty awesome person, and if you get a chance, please check out her website.

Yes, I know it's scary when I get to thinking too much, but this can actually be a serious issue.  In fact, it became such an issue at my previous employer that this is a huge reason I left my job of over two years.  I would get hassled about using my FMLA time etc.  So I wonder how many of you out there have had similar issues.  How many of you have had people question the validity of your illness etc.  I would get questioned about my illness, made to think that I was faking it etc.  I would try to explain how it affected me, all of the different symptoms, and then get told that there was simply no way so many things could be attached to one disease.  REALLY??  Sometimes I simply wish people would take the time to get educated about things they don't know about.  Or at least really listen when people try to explain to them that this is how it is, this is how I cope with it, and this is what you can do to help etc.

So for those of you that don't know, here is a short list of symptoms, including but not limited to pain, fatigue, and fibro fog (my LEAST favorite one) associated with fibromyalgia from about.com:

General Symptoms

  • Delayed reactions to physical exertion or stressful events
  • Other family members with fibromyalgia (genetic predisposition)
  • Sweats
  • Unexplained weight gain or loss
  • Cravings for carbohydrate and chocolate
  • Headaches & migraines
  • Vision changes, including rapidly worsening vision

Muscle & Tissue Symptoms

Sinus & Allergy Symptoms

Sleep-Related Symptoms

  • Light and/or broken sleep pattern with unrefreshing sleep
  • Fatigue
  • Sleep starts (falling sensations)
  • Twitchy muscles at night
  • Teeth grinding (bruxism)

Reproductive Symptoms

  • Menstrual problems
  • PMS (as an overlapping condition)
  • Loss of libido
  • Impotence

Abdominal & Digestive Symptoms

  • Bloating & nausea
  • Abdominal cramps
  • Pelvic pain
  • Irritable bowel syndrome (as an overlapping condition)
  • Urinary frequency

Cognitive/Neurological Symptoms

  • Difficulty speaking known words, other language impairments (dysphasia)
  • Directional disorientation
  • Poor balance and coordination
  • Paresthesias in the upper limbs (tingling or burning sensations)
  • Loss of ability to distinguish some shades of colors
  • Short-term memory impairment
  • Confusion
  • Trouble concentrating
  • Staring into space before brain "kicks in"
  • Inability to recognize familiar surroundings

Sensory Symptoms

Emotional Symptoms

  • Panic attacks
  • Depression (as an overlapping condition)
  • Tendency to cry easily
  • Free-floating anxiety (not associated with situation or object)
  • Mood swings
  • Unaccountable irritability

Heart-Related Symptoms

  • Mitral valve prolapse (as an overlapping condition)
  • Rapid, fluttery, irregular heartbeat
  • Pain that mimics heart attack, frequently from costochondritis (as an overlapping condition)

Skin, Hair & Nail Symptoms

  • Pronounced nail ridges
  • Nails that curve under
  • Mottled skin
  • Bruising or scarring easily
  • Hair loss (temporary)
  • Tissue overgrowth (non-cancerous tumors called lipomas, ingrown hairs, heavy and splitting cuticles, adhesions)

Miscellaneous Symptoms

  • Hemorrhoids
  • Nose bleeds

So my response when people ask me, well what symptoms are there, how does it affect you......there's simply too many things to list.  No we don't all have all of these, and even the ones we have, we don't have ALL Of the time. But it's important to note that these can affect all of us in different ways, that they can overlap with other issues and it's important to always talk to your doctor about them if you notice an increase or change in severity. I'm definitely NOT a doctor.

Something else that bothers me is how people react, even within the chronic illness community about the medications that all of us do or do not choose to take.  I don't feel like we should be judging one another about what medications we take, or how we each choose to manage our pain.  For me personally, I chose to come off of all of my medication and try diet, exercise, yoga etc and see if that helped.  I felt like a zombie 99% of the time, but I think that's natural when you're taking on average 34 pills a day, give or take a few depending on the pain level.  When I came off of my meds, I had more energy, I felt better, I didn't feel so foggy, groggy and over all out of it.  I felt more alert than I had in years.  But just because that worked for me, doesn't mean that I expect it to work for you! And for those that aren't living in chronic pain, how dare you judge us that are?  You have no idea what it feels like to be in constant pain, to go from being fine one minute to starting to hurt, and then coming to the realization that a full on flare up is coming up.

If you have people in your life that are trying to constantly dictate to you how you should be living, or what you should be doing to feel better, walk away.  I'm not saying to cut them out of your life, but it's not worth engaging them in a debate, or trying to explain to them repeatedly how you feel.  I know that for me personally the added stress of that alone can send me into a flare, and it's just not worth it to me. We all have to decide what is and isn't worth it in our individual circumstances, but put yourself and your well being first.

I know that for myself, cutting those people out of my life, has helped so immensely. I know that having a boyfriend that not only fully understands, having grown up with a mother that also has fibro, but completely supports me and my decisions is amazing. Knowing that he loves me, and understands when I say I have fibromyalgia yes, BUT FIBRO DOES NOT HAVE ME!

So, rant is over and I have but one question: how do YOU deal with other peoples perceptions of your chronic illness?

Comments

Popular Posts