An Open Letter to Those Who Struggle

Dear Struggling Autoimmune Patient, I know how much you struggle. I know that you hide how much you hurt. I know that every small wince is an indicator of your physical pain. I know you. I am you. This is not a sob story or an over-dramatic cry for attention. This is a letter to those who hurt and struggle, so you know you’re not alone. As I’ve gotten older, the number of friends I have that share these same struggles has greatly increased. I was the only one I knew struggling with this when I was diagnosed in high school, and relied heavily on my family and closest friends, who still didn’t fully understand how difficult this really is (even though they loved me through it graciously as if they did understand, and I’m so thankful for that). I can see now that I’m not the only one who struggles with these things...I’m not the only one who doesn’t really know how to fight through it some days. And to be perfectly honest, I’m typing this on the fourth day of what some would call a “lupus flare,” although mine are much less severe than some of you. What that means for me is: -Joint pain that occasionally makes it more challenging to walk around much -A sore throat that feels like strep (but it’s not contagious) -A churning stomach -Easy loss of concentration -An overwhelming need to sleep as much as humanly possible That’s what it looks like on my “flare” days..on my bad days. On my good days...I think if you’d look at me, you’d never know how much I struggle with food and exercise. I think about food all the time. Doctors always stress the importance of diet and activity for patients like us, but it seems like such a huge beast to tackle that I honestly don’t have the energy to take it on. I think you’d never know how much I dread grocery store runs and going to the gym, all of the things that I SHOULD make a priority because of my autoimmune issues, and because, well, everyone should be healthy. Why did the good Lord have to make exercising SO DANG HARD for some of us? I still don’t have the answer to that question. Despite my utter exhaustion, and the fact that my body feels like I have a bad case of the flu, I’m expected to push forward and keep going and keep pushing...because our culture tells us it’s never okay to rest. Your life is hard. I know that. And sometimes it takes hearing the truth from someone who is also going through it to really let it sink in. This is the truth. It is important to rest, but it’s worth it to keep fighting. To keep trying. It’s worth it to confide in your friends and family about your struggles and to find people who can relate to you. It may even be time to find a counselor, even if it’s just someone to walk you through how your autoimmune disorder makes you feel, and how to deal with those feelings. Your lack of energy does not make you worthless. Your fight and your drive are valuable. Don’t be afraid to lean on people around you, and on Christ, to make you stronger. In my case, I realized that I love to cook. It can be exhausting, but when I cook my own food (even in the crockpot), I feel better. I eat more vegetables. I’m able to control what is in my food. I pushed a little harder one night and realized that I really enjoy pilates. And after a few weeks, I noticed that my pain was a little more manageable. It’s no weight lifting, or running on the treadmill, or training for races, but it’s something. I started going to a counselor to talk about a lot of things, including adjusting to life on my own where my family and friends aren’t right there at home with me when I’m not feeling well, and how to learn how to deal with it on my own. My pain is not gone, and I don’t think it ever will be. And just like this week, I’ll still have flares. Life is still not always easy, but fighting through it makes it more bearable. You are strong. You are fierce. You are a fighter. Love, A Friend Who Understands