an open letter to you

To you, the newly diagnosed or newly symptomatic or newly accepting:

Take a deep breath.

So, you’ve recently been diagnosed with a chronic illness or, maybe, you’ve started to get weird symptoms — you’re tired all the time, you hurt, you feel like your body has betrayed you — but whatever it is, you’ve become a member of a club no one would willingly join: You’ve got a chronic, maybe invisible, illness. You didn’t ask for it and certainly don’t deserve it, but, for whatever reason, you got it. And it sucks, I know. Trust me: I know.

I think the first and most important thing is it is OK to grieve. Of course, it is. Hell, it’s necessary. This illness, whatever it is you have, if it hasn’t taken anything from you yet, it will. It’s critical to mourn that part of your life, the part when you didn’t have to worry about side effects and drug interactions, letting down friends and family, people who don’t understand and the spoon theory. Mourn your health, the changes its loss will bring and the choices you never thought you’d have to make.

For too long, I did not partake of this crucial step. I thought by the force of my will I could make my recalcitrant joints and that bully, my immune system, obey. I would power through, not give myself the breaks I didn’t think I needed, ignore the consequences. I hope it doesn’t take you five years to come to grips with your new reality. I think I’m still in mourning for that lost girl, but at least I’m no longer stuck at denial. Please, take the time to grieve.

Now, something almost as important as mourning: Find yourself a great doctor/nurse practitioner who listens to you and doesn’t belittle your symptoms. I have had one amazing rheumatologist, one fabulous nurse practitioner and one horrid doctor. I stayed with the bad one far too long, as he wasted time on things that didn’t work, prescribed me drugs I did not want to take and ignored my phone calls and my symptoms. If you don’t click with your doctor, move on. Life with illness is hard enough; your doctor should be in your corner. If he or she isn’t, find someone who is.

But, even with a great doctor, it may take awhile to find something that works for you. Try not to get discouraged. There are a lot of drugs out there, and it often takes some creativity and blind luck to figure out what will give you relief. In the meantime, don’t settle. The goal should be remission. You may not get there, but it’s something to strive for.

Now, explaining to friends and family, bosses and co-workers about your illness is difficult. Being sick 365 days per year is something healthy people can’t really understand. Some won’t even try. That hurts; I know it does. People you thought you could count on may work their way out of your life. It’s OK to decry the loss, but it’s better to just let them go. Some will come back; some won’t. Celebrate the ones who remain, who want to stick with you through thick and thin. But remember: This is hard on them, too. Sometimes it will seem like your loved ones aren’t giving you the support you need. It may just be that they are burnt out or maybe they feel helpless. It has to be hard, to watch a friend, partner, spouse, sibling, son, daughter be sick and in pain. People sometimes forget that the ones closest to us carry a heavy burden, too. Appreciate the ones who help you, but let them know they too need to take care of themselves.

And when the people in your life can’t or won’t support you, there are so many of us out in the world that are ready and willing to commiserate, offer advice or just listen. Even though it may seem like it sometimes, you are not alone.

(Image via We Heart It.)