Invisible disabilities, also known as Hidden or Non-visible Disabilities, are disabilities that are not immediately apparent, are typically chronic or degenerative and usually significantly impair normal activities of daily living.
A quote from my family doctor was, “anybody who can walk in here and shake my hand must be doing okay.” I told him yeah, I guess I’m okay but I was thinking you have no idea.
Years in pain, tired, moody and so many changes in me for no apparent reason. Hiding everything from everyone (or at least I thought I was), pretending to be doing better than I was; until it no longer worked. A life-time of denial may have kept me “happy-go-lucky” but I now realize I could have been so much more if I faced my disability head on at a much earlier age.
Lack of encouragement, clueless parents, crying for no reason in grade school, taking anti-depressants; each day getting harder to simply get out of a chair or walk up some stairs. Why was this all happening?
Invisible Disabilities Exist
When you have an invisible disease it is difficult to convey your perspective with ignorant people. How often have been asked these cliché’ questions?
- Did you go to the doctor?
- Have you tried this? What about that?
- Do you exercise?
Or from every other doctor I’ve ever seen:
- Don’t know what else we can do for you
- You can see an Occupational therapist (tried that)
- This disease is forever, it will not heal.
Don’t Give Up
I am not giving up, but I want to make others realize: A nap will not cure me but it will help me; I am not lazy, I take medication and it sometimes makes me sleepy; I am not angry but sometimes cranky out of frustration; I struggle daily with pain, mobility problems, fatigue, and the challenges of my environment. Do people say to you, “It can’t be that bad; you look good.”
Despite the fact that I am experiencing emotional frustration, self esteem issues and knife stabbing pain in my feet, of course I look good, I always try to look good, especially during the last 25years in my privileged white-collar job where I wore a tie and jacket everyday! Charcot-Marie-Tooth disease affects you physically, mentally and emotionally. This rare disease cannot be seen, but we feel it.
I don’t mean to harp only about CMT. There are many, many other invisible disabilities, some much more difficult and painful than Charcot-Marie-Tooth disorder. While I am striving to raise awareness of CMT, this post is meant as a shout-out to anyone fighting a silent disease.
Your Disability Isn’t Hopeless
Here are 5 top tips to make living with a disability easier. These are borrowed from my article 11 Tips for Living with a Disability
- Get Rid of Clutter
- Use Delivery or Pickup Services
- Plan a Laundry Week
- Keep Common Items Handy
- Consider Adaptive Clothing
Many people living with a hidden physical disability or mental challenge are still able to be active in their hobbies, work and be active in sports. On the other hand, some struggle just to get through their day at work and some cannot work at all.
List of Some Invisible Disabilities
- Anxiety disorders
- Asperger Syndrome
- Bipolar disorder
- Brain injuries
- Charcot-Marie-Tooth disease
- Chronic fatigue syndrome
- Chronic pain
- Circadian rhythm sleep disorders
- Coeliac Disease
- Crohn’s disease
- Ehlers Danlos Syndrome
- Food allergies
- Fructose malabsorption
- Hereditary Fructose Intolerance
- Inflammatory bowel disease
- Interstitial cystitis
- Irritable Bowel Syndrome
- Lactose Intolerance
- Lyme Disease
- Major depression
- Metabolic syndrome
- Multiple Sclerosis
- Multiple Chemical Sensitivity
- Myasthenia Gravis
- Personality disorders
- Primary immunodeficiency
- Psychiatric disabilities
- Reflex Sympathetic Dystrophy
- Repetitive stress injuries
- Rheumatoid arthritis
- Schnitzler’s Syndrome
- Sjagren’s syndrome
- Temporomandibular joint disorder
- Transverse Myelitis
- Ulcerative Colitis
A ton of information is available in this PDF from the University of Massachusetts: Invisible Disabilities
I’ve also just discovered a support group for people with invisible disabilities. Invisible Disabilities.org Maybe I’ll meet you there!
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Share this message in support of a friend or family member who is fighting in silence and show that you are always there when that someone needs to talk.