When the Body Betrays: Living with an Invisible Illness

They had been together for 70 years. He died the day after Christmas. She is 89 and has Parkinson's and heart failure coupled with excruciating neuropathy. "I ask God, why am I still here? Why must I suffer?" Yet she carries on.

Some of the most brilliant and courageous people I know live with debilitating illnesses in which their bodies have declared war on other parts of their body. Rheumatoid Arthritis, Lyme's Disease, Lupus, Colitis, and complications from the medications that give barely any relief.

It's hard to make sense of autoimmune diseases and invisible illnesses, particularly when they strike young and otherwise healthy people. People who have done everything right to take care of their bodies, and yet here they are, fighting a war every day. Some days the war is to get out of bed, other days the war is fighting the emotions that come with not being able to lift up your children because of the pain.

The level of grit and resilience it takes to live with an invisible illness is incredible. For the amazing folks I know, I'd be willing to bet that 95% of the people they know (myself included) have no idea the kind of pain and exhaustion they press through on a daily basis. I know what they share with me is only the tip of the iceberg.

So how do they do it? How do they continue to go to doctor after doctor who look at them at age 28 or 30 and say, "You're young and look healthy, there's nothing wrong with you." or "Your blood work looks good, it's not ____".

Test battery after battery until finally, something clicks.

The Rh factors are high, the Antinuclear antibody testing is positive, your thyroid levels are non-existent, and yes, you do have deficient IgA levels indicating Coeliacs, I guess you weren't really trying to be high-maintence with your aversion to gluten after all...

I can only imagine the frustration, the exhaustion, the lack of understanding.

So, how does a person press on when their body seems to be saying the opposite?

I decided to ask a woman, who I love and admire, a few questions about her experience living with Rheumatoid Arthritis. Here's what she had to say:

Q: What would you like someone to know about living with an invisible illness?

"Many folks look completely "normal" or able-bodied but are in fact disabled.  I am technically considered disabled but nobody would ever guess that since I don't usually have an outward sign of disability like a cane or crutch. 
Be compassionate, kind and caring to everyone you encounter.  You just never really know what someone is going through so be kind to people and remember that a person's outward appearance can be deceiving -they may have trouble walking, opening doors or moving quickly but appear completely "normal" or young and fit. 

Autoimmune diseases can strike at any age.  Oftentimes people tell me I am too young to have rheumatoid arthritis, which is annoying because I do in fact have RA and it doesn't care how old I am - it's slowly destroying my body and trying to take me down every day."

Q: What misconceptions do people have about invisible illnesses?

"Be mindful that some people have to take opiates for chronic pain and that not all opiate users are addicts.  I take hydrocodone twice a day but only a half of a pill at a time (so one full pill per day) so that I can sit down and have focus enough to do my job.  Without the medication the pain is so excruciating that I cannot think (she was foam rolling her hip due to pain at this very moment). Due to the current opiate epidemic, I feel like I am automatically targeted as a drug user, seeker, and abuser.  I don't want to be on this medication and most people with chronic pain do not; we are on it because without it we cannot participate in life."

She is hoping to get a hip replacement this summer, at age 38, to ease the pain.

Q: What is the hardest thing about living with an autoimmune disorder?

"I think flares are the hardest times, especially when I am bedridden.  I just feel useless and like I am a disappointment to those around me because I can't help out in the ways I normally would or I cannot fulfill my roles (e.g. as mother, wife, employee, etc.).  I just feel like a letdown to myself and others.  I am fully aware that many people with these diseases are also depressed and I am not surprised because everyday is a battle and some days are better than others."

Q: What keeps you going during a flare or after a frustrating medical appointment?

"What keeps me going is my faith in God and the support of my family, especially my husband.  It is vital to have a great support network because this disease is very humbling -you have to know and accept your limitations, and you have to be humble and ask for help."
"I think it is important to always keep a positive mindset, especially during flares and to thank God for my many blessings, including this disease.  I try to offer up my suffering to God to help others or for a certain prayer intention I might have.  That helps me know I don't suffer in vain."

Q: How can people best support a loved one who has an invisible illness?

"Be a good listener and listen without judgment if I'm complaining or sharing something about how I feel.  Oftentimes those closest to me try to dismiss my pain or the fact that I have a debilitating chronic illness with statements like "everybody has something" or "oh, yeah, I have [insert body part] pain too".  Most times I just want to verbalize how  I feel to get it off my chest or to vent (and usually I try not to talk about the pain or complain) so when the listener doesn't really listen or tries to take my situation and make it about themselves, that is frustrating and can come across as if the person doesn't really care about me or my situation (and maybe they don't, and that's ok too!).

Bottom line, if someone is sharing something about themselves or their pain, they are probably in a lot of pain and not trying to complain so don't make it about yourself or minimize their situation by saying everybody has problems or we all have something. Just simply listen."

When I think about the people I know who struggle with autoimmune issues or other invisible illnesses, I find myself inspired. Everyday they are fighting a battle that most of us are completely ignorant to, yet they charge on. They travel the world, they camp in all the national parks, they run organizations, they are amazing and active parents. We never know what someone else is going through emotionally, physically, or spiritually. Compassion is medicine that we can all dispense.

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