For those of you who don’t know, I have a chronic, genetic disease called Celiac Disease (CD). I was diagnosed about 7 years ago, so I would like to think I know a thing or two about it. But today, I want to offer those recently diagnosed (or soon to be diagnosed) with a chronic disease a little bit of encouragement.
You are not crazy.
The road to diagnosis is often a very hard one. It is full of people thinking you are crazy, lots of random pain and symptoms that often have nothing to do with each other, you thinking your crazy, random fantasies about removing entire organs out of your body, and your cat looking at you like you are crazy. If your general practitioner does not believe you: find a new doctor. In my experience, you are feeling pain for a reason. Keep looking until you find a doctor that actually wants to help you get rid of that pain…or, at least for many people suffering from chronic pain, finally have an explanation for the pain.
Pain is not normal.
You are in pain because something is not working right in your body. Yes, sometimes our minds can trick us into thinking that we are experiencing pain, but this is often not the case. Once you find a doctor that is interested in helping you, you are on your way to a diagnosis And once you get that diagnosis…
Time to celebrate!!!
At first, having an answer to your pain is almost as good as getting rid of the pain, so bask in that! It is incredibly exciting that you found an answer because not only are you not crazy, but you can work towards treatment; however, as time goes on, that “finally!!!” feeling goes away.
It’s okay to grieve.
You have to come to terms with the fact that your body is no longer considered “normal.” This issue will affect you to certain degrees for the rest of your life, and it is okay to be sad about it. It’s okay to cry. It’s okay to go through a mourning period. When my mother with diagnosed with CD, she grieved the loss of gluten in her life over the months following. Yes, she was thankful for the diagnosis, but it was a huge lifestyle change to cut gluten out of her system. It probably sounds silly to someone who does not have a chronic disease, but you must redefine yourself in this new lens of chronic illness.
New body, new lifestyle!
When discovering this new body, your needs will change on many levels of your personhood, and it’s okay to be needy for a few years. It’s all part of the transition! You are finding the new you, and this new you is allowed to be a little more whiny than you were.
Advocate for yourself!
The best thing you can do to help your needs be met and for others to know what your needs are is to tell them! It’s amazing how far a few sentences of explanation can go to avoid or fix problems. The way to treat CD is to be on a completely gluten free diet, so I am constantly telling people I’m gluten free. Whenever I go to a party I tell the host about disease but also bring my own food. I have learned that it is better to bring my own rather than put my body at risk of cross contamination and the host at risk of feeling horrible for getting me sick. Overall, it’s a win-win when I bring my own food. When I started my college search, my advocacy tactics were much more aggressive. If I am going to give a college thousands of dollars to live and learn there, I cannot have additional stress about getting sick every time I eat something. While I had many an awkward conversation with admissions counselors and disability reps, it has been worth the fight to find a school that is not only willing to work with me but actually have realistic accommodations for me. Now I live in an apartment with a small kitchen rather than have any meal plan. Also, my roommate is gluten free, so there is no chance of cross contamination (and getting sick) in this place! It is so much better to stick up for yourself than suffer in silence. There is no reason for you to be in pain if a conversation can remedy the situation. And often times you won’t know if your issues can be accommodated until you ask, so don’t be afraid! Yes, it may be awkward, but it is better to endure a few awkward moments than be sick.
You are not alone.
This process can be rather isolating. Your friends, family, and spouse will not fully understand what you are going through unless they also have a chronic disease, so I highly recommend you search out people with a similar affliction. It is amazing to see how quickly walls fall down when you have a similar chronic issue. It is so healing to be able to talk about it with someone who truly understands. I have made many friends in bookstores with those reading gluten free cookbooks and those in the gluten free aisle at the grocery store. People all over the place are suffering from a chronic disease, too! You just have to know where to look. Don’t be ashamed to look into support groups. It may feel odd or even weak to go to one, but these people are literally going through the same thing you are, so why go through it alone? Another great resource for support are blogs. There are blogs about everything these days, and it is a pretty easy community to delve into, so take advantage of it.
Remember, you are not crazy. Your pain is not normal. It’s time to celebrate your discovery! You are most certainly allowed to grieve. Take time to develop a new lifestyle. Learn to advocate for yourself, and always know that you are not alone.
If you are going through a diagnosis process or have been diagnosed with a chronic issue, please feel free to send me a message! I would be more than happy to talk with you about it. Like I said, I have been living with a chronic disease for 7 years, so I know exactly what you are going through.