Getting sick with a chronic condition is life-changing and confusing. I have become a bit of a pro when it comes to being sick, so here are a few tips on what to do if you or someone you love ever get diagnosed with a chronic illness:
- First and foremost, do not panic. Take a second to breathe, and realize that just because you now have a name to label your symptoms doesn’t mean it’s going to get worse here on out. If anything it actually gets much better since you are able to explain why certain things happen to your body and how to treat them.
- Realize that it’s normal and okay to cry. Doctors have seen it all, and if they’re good at their profession they will be sympathetic towards your feelings (And if they’re not, it’s definitely not you — it’s them).
- Do not go on Google! I cannot stress how important it is to process everything before reading dozens of articles and Facebook forums about your illness. Whether it’s an absolutely extreme version of your illness or a post venting about how difficult life becomes with this condition, there isn’t a lot that will help you out that very same day. Give yourself a little time and ask your doctor questions, rather than relying on WebMD to give you a cure. I found that negativity can really have a direct effect on your health and healing, which is why I try to keep things as stress-free as humanly possible.
- On a related note, make sure to find out how to contact your doctor in case you need to reach someone with a question about symptoms you might be having. Most doctors who deal with people with chronic conditions have a way of reaching them, whether it’s a nurse hotline or an email address. I have a neurologist who offers an in-home service where I can email him with questions or prescription refill requests, and he replies within a day. It’s been a really valuable resource and I tend to stick with the doctors who really care about their patients.
- If a little bit of time goes by and you’re still afraid to research what you have, ask a family member or friend to do some research for you — then leave out the really unhelpful negative information. I’ve found a lot of people with chronic conditions can be incredibly pessimistic and bitter — and they have every right to be! But the more you can try to keep your spirits high and look towards your bright future, the better off you will be. I very firmly believe in the power of positive thinking, and although that may not be able to heal your body, it can at least keep your mind in a healthy state.
- If you do have a hard time staying positive about life, though, there is absolutely no shame in seeing a therapist or counselor to vent your frustrations to. Never feel bad about needing extra help. It doesn’t mean you aren’t strong — sometimes I think being able to ask for help is the hardest thing a person can do, but it can be life-changing.
- Lastly, be open with friends and family about what you need. It can be difficult for loved ones to know how to react or behave when someone close to them gets sick, but that doesn’t mean they don’t want to be there for you. Giving people a very concrete thing they could do to help — such as talking on the phone for fifteen minutes a day or making a meal for you and your family — is actually really helpful.
I know how scary and life-changing getting a chronic illness is. I remember getting diagnosed with POTS like it was yesterday. Collecting a few other “syndromes” and conditions along the way hasn’t been easy, but I’ve at least had enough experience to stay a little calmer when I learn something new about my health. Finding five things you are thankful for despite being sick is something I try to do on my most difficult days. I am thankful for my family (This includes Macy!), Robert, my best friends, the sunshine, and chocolate. That was a really easy list, and I grouped a bunch of people together. Despite not having the life I had dreamed of for most of my childhood, I still have some pretty incredible blessings.