You’re not who you used to be, but you’re not considered to be “really” ill, either. Instead, you’re somewhere in the middle, with none of the support either side offers.
As I coach clients, I see again and again that the psychological effects of dealing with a chronic illness are tougher to handle than the physical things.
Anyone who’s sick tries to imagine what’s wrong; maybe you visited doctor’s offices, had blood drawn, went online, tracked down various promising protocols. The physicians or other health care professionals you consulted ruled out some things, but after awhile, no one knew exactly what ailed you. Things got a little more complicated and a lot more difficult then.
Naturally, you became stressed. There was definitely something wrong, but medicine didn’t have any answers. You had no diagnosis that you could hang all these symptoms on.
That’s a limbo no one wants to live in.
If you’d been diagnosed with cancer or a brain tumor, MS or any one of thousands of diagnoses understood and sanctioned by the medical establishment, you’d receive the sympathy and support we offer to the ill. Neighbors would leave casseroles on your porch, and friends would offer to go to the grocery store or babysit for you. People wouldn’t expect you to work— you should rest while your body healed. Family members would get the same sympathy and support.
But if you’re diagnosed with a misunderstood illness like Lyme Disease, Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Fibromyalgia (FM), Morgellon’s, or a Chronic Inflammatory Response Illness (CIRS), among others, instead of sympathy and support, you might be met with baffled expressions and/or disbelief. Maybe people openly wondered if it “was all in your head.” Doctors may have told you that they didn’t “believe in” the illness previous doctors diagnosed you with, or you thought you met the criteria for. No one offered to help, and sometimes people were outright mean.
What’s an emotionally healthy person to make of that scenario? How could anyone handle that well? It’s a nightmare.
You’re not who you used to be, but you’re not considered to be “really” ill, either. Instead, you’re somewhere in the middle, with none of the support either side offers. You don’t have your old life and identity for support, yet you don’t have a new identity that takes into account your new capabilities, either. And most importantly, you haven’t adjusted to those differences yet.
Life sucks, living in that limbo. It feels like you have a new, crappy life in which you too often feel powerless, tired and overwhelmed. Anyone in that situation would wonder, how can I ever find happiness like this, when everything I wanted is now out of reach? And if no one knows what’s wrong, how can I begin to get better?
Admittedly, this is a very tough spot to be in, and each of us who’s been there has cried many tears and walked down many empty paths looking for answers. We’ve each had to slowly, painfully carve out a new identity for ourselves that accounts for our new symptoms and disabilities. That adjustment doesn’t happen overnight.
My advice, as someone who’s both been through it and who has received a lot of training since:
- Give yourself time to adjust. The rug’s been pulled out from beneath you, so give yourself time to mourn your losses and define new goals for yourself. You may have to develop new support systems, and ways to support yourself financially, physically and mentally.
- You will suffer some losses. You may lose a few friends, careers or spouses along the way. You may have to lower your standard of living. But you’re also likely to gain some new friends who don’t care if you haven’t blow-dried your hair since last Tuesday, or that you’re no longer putting money into your 401k. Let yourself cry over these losses.
- Chronic illness is not a personality problem or a character flaw. Please don’t add shame or embarrassment to the long list of things you suffer from. Disappointment is natural under these circumstances, but it is not your fault that you became ill.
- There are endless avenues for recovery; keep searching for yours. I had no idea when I went to interview Ritchie Shoemaker one day in 1995 that he would identify my real diagnosis and set me on a path to wellness and two new highly personally satisfying careers (author and health coach/counselor), but he did. Maintain hope that you, too, will find such a dedicated, skilled physician or other health professional at some point. There are still some of them out there.
- This is the only life you’ll have, so regardless of circumstances, don’t forget to live it. You know the pretty, silky underwear you save in your lingerie drawer for that “special” occasion? The bubble bath that makes your skin feels like a baby’s bottom that you never use because it’s so expensive? What the hell are you waiting for? Every day is a miracle worth celebrating. So find a reason to celebrate.
And if you cannot find reasons to celebrate, it doesn’t mean that there’s no more happiness in the world for you. It means you need some help finding some new opportunities for happiness to occur. Please make an appointment with someone like me who can help.