When You're No Longer Healthy, but No One Seems to Understand Your Illness

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 little or none of the support either of those positions offer.

As I coach clients, I see again and again that the psychological effects of dealing with a chronic illness are often tougher to handle than the physical things.

Anyone who’s sick tries to figure out what’s wrong. Maybe — probably — you’ve visited doctors’ 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 Western 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.

You can be in a limbo as well if you get a diagnosis, but it’s not one that most health practitioners know about. If you’d been diagnosed with a condition understood and sanctioned by the medical establishment, you’d likely receive the sympathy and support we offer to the ill. Neighbors might leave casseroles on your porch, and friends might offer to go to the grocery store or babysit for you. People might understand if you weren’t working — you should rest while your body heals.

But if you’re diagnosed with a misunderstood illness like Lyme disease, ME/CFS, fibromyalgia (FM), MCAD/MCAS or chronic inflammatory response illness (CIRS), among many others, instead of sympathy and support, you might be met with baffled expressions and/or disbelief. Maybe people have 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 these scenarios? How could anyone handle that weird limbo well? It’s a nightmare.

And let’s not forget the identity stuff associated with having a misunderstood chronic illness. 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 loss of possibilities and capabilities, either. And most importantly, you haven’t adjusted to those differences and losses yet. You’re likely still in shock this happened to you.

Life is difficult at best, living in that limbo. It can feel like you have a new, crappy life in which you feel powerless, tired and overwhelmed way too often. 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?

I know from personal experience that 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 and is able to adapt to our new health status. That adjustment doesn’t happen overnight.

My advice, as someone who’s both been through it, and who has coached hundreds of people with these illnesses over the years:

• Give yourself ample time to adjust and mourn your losses. 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 sustain yourself financially, physically and mentally. You will suffer some losses. You may lose friends, careers or spouses or significant others along the way, because they just don’t “get it.” You may have to adjust to a new, lower standard of living. But you’re also likely to gain some new friends who don’t care if you haven’t had the energy to blow-dry your hair since 2007, or that you’re no longer putting money into your 401k. Let yourself cry over these losses, as they are significant ones.

• Your chronic illness doesn’t reflect a personality problem or a character flaw. Please don’t add shame or embarrassment to the long list of things you have on your plate. Disappointment and grief is natural under these circumstances. It is not your fault that you became ill.

• Be good to yourself and put self-care first on your priority list. Do only what your body tells you to do and find appropriate, healthy ways to soothe yourself. Yoga, tai chi, meditating are helpful. Rest!

• There are endless avenues for recovery; keep searching for yours. Maintain hope that you will find a dedicated, skilled physician or other health professionals to add to your team at some point. They are still out there. I know because I’m working with them every single day.

• This is the only life you’ll have, so regardless of your own personal set 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 great silk tie your Mom gave you before she passed away and has been hanging in your closet ever since? What the heck are you waiting for? Every day is a miracle worth celebrating. Find reasons 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.