This is me and I have Lupus though this photo does a really good job of hiding that fact! It helps that I have a wig to hide the hair loss, Dermablend cosmetics to hide the lesions on my face, and a smile to hide all of the pain, nausea and general spaciness that go along with who I am. I was diagnosed with Lupus in 2006, shortly before a deployment with the military. It was very well controlled then, and they thought that it was limited to simply cutaneous lupus and I was allowed to deploy. That was a mistake and caused my first flare, and my subsequent forced medical retirement.
My illness has affected every single aspect of my life. I can’t think of a single thing, from how much I sleep to what I eat to who my friends and family are that hasn’t been affected. My very promising career was cut short by this illness; I’ve had to move because of this illness; People have chosen to not be a part of my life rather than accept my illness. The bad thing is that I know that each of these things can and will continue to happen for the rest of my life. I’ve also lost the beach and the sun, two things that have always brought me great mental clarity and peace. This illness, to me, is a thief.
I got a diagnosis much quicker than most people do. It took less than a year, and I credit the speed of my diagnosis to the fabulous military rheumatologist that worked WITH me to figure out why I was so sick. Getting the cutaneous lupus diagnosis wasn’t all that complicated as I had a textbook version of the “butterfly” rash. It was when the rash began to reappear and was resistant to every treatment that they could throw at it that things got tough. I saw every single specialty that Wilford Hall Medical Center contained, excepting pediatrics. I even got sent to quite a number of specialists at Brooks Army Medical Center. My favorite was, by far, when I was sent to see the Infectious Disease doctor and underwent some of the most humiliating testing I’ve ever done only to be told that I was “uninteresting” to the doctor. I’m wishing now that it HAD been some exotic parasite that he could have had some fun with and not Lupus. After many months of seeing specialists, I saw my favorite rheumatologist again and he told me that based on everything that he’d been able to gather from blood work, and all of the testing with the specialists, I had Lupus. He was so saddened by my diagnosis, and the subsequent forced retirement that he had to initiate because of it. He was such a good doctor and I think I would have suffered a lot longer and fought for a diagnosis for many, many years without him.
Initially, my friends and family were relieved that I had a diagnosis and that the treatments were seeming to work well for me. As my health began to improve, this changed into the “you don’t look sick” mindset. One by one friends began to disappear because I didn’t look sick and yet there were things that I just couldn’t do with them. Then, I moved closer to my family, with the hopes and promises of a more reliable support network. This however was a mistake as well because I didn’t look sick. I was guilted into disregarding a lot of the warning signs that my illness gives me to slow down and found myself beyond exhausted, constantly battling with a cold and losing lots of weight for no apparent reason. My family decided that I wasn’t really sick because I didn’t look sick and they cut all ties with me after taking my kids from me. I had developed an online network of friends that were there for me during this time, and the majority of them were fantastic. Some of them couldn’t understand exactly what this stress on top of already being ill meant though. One of them moved into my spare bedroom and became a great help with picking up the slack around the house when I couldn’t and taking me to all of my doctor’s appointments. For the most part, the online support group of friends that I have are extremely understanding of my illness and are there for me when it gets bad. Most of them know that it will dramatically change my personality when I’ve had enough and they stick through it and are just there. They do their best to make me laugh when I’m feeling bad, and help me to spread awareness about some of the things that this disease can do. They check on me when they know I’ve had a bad day, and keep me company when I’m stuck in a waiting room or the ER.
How does being chronically ill make me feel? It really just depends on the day. If it’s a bad day it makes me mad as hell. On a good day, I try to roll with it and enjoy the good day. Overall, it makes me appreciate the good days more than someone that doesn’t have a chronic illness.
The one thing that I would have told myself is exactly how hard my journey was going to be. But I would also have reassured myself. I am strong, and this is a challenge but not impossible.
The biggest realization that I’ve had during my illness is just how many personal relationships that it affects. It’s also being a big realization to recognize just how much pain I can endure without losing my mind.
Where I see myself in five years is a very difficult question for me to answer right now. I have a five year plan and I really hope that everything will work out for me to complete it.
The only alternative therapy that I have tried is pain management instead of taking pain relievers. It works more days than it doesn’t work, so I consider it a success. It’s one less pill to take, and though it’s hard to think around the pain sometimes, I think that makes it worth it.
The little things that make my life easier are all people! It’s having people that check on me EVERY day. They celebrate the good days with me and support me on the hard days with their love and concern.
Tools that make my life easier would include my Kindle and hooks. My Kindle holds all of the notes that I take for my appointments and has alarms to remind me of appointments or important things to do. Hooks are a gift from the gods. I hang everything of importance on its very own hook as if it’s my religion. I can always find these important things when I need them thanks to hooks.
I don’t know why I have this illness instead of someone else. I haven’t thought about it before. Perhaps I have this illness because I am strong enough for it. I really don’t know.
So, you want to know what it’s like to live with this illness? It’s scary. It’s always scary, even on the good days during remission. You never know when it will strike, or what it will strike. You never know if that little sniffle is going to turn into pneumonia while you sleep. You don’t get to make plans, even when things aren’t so bad, because you don’t know if you’ll be able to follow through with them. You never know when your fever will shoot up through the roof and send you to the doctor again. You feel helpless and worthless when it’s a bad day. Everything hurts, but you still look fine. You’re terrified to tell people how you feel, afraid they will get tired of hearing the truth and stop asking. You’re afraid that the people around you won’t understand because you don’t look sick, and you know that most of them don’t. It’s just scary.
Has my physical illness had an effect on my mental health? To a certain extent it has. It’s made me slightly germ phobic. Because of having so many relationships suffer because of my physical illness, it’s made me skeptical of other people, and untrusting. I keep my distance from people, rather than have to deal with their judgments about the status of my illness.
I am grateful for a housemate that takes wonderful care of me.
I am grateful for friends who are always there for me.
I am grateful for a partner who is patient and understanding with me during the times when I need it most.
I am grateful that my illness isn’t worse.
I am grateful that there are others like me, who are sharing their stories and educating the masses.
I would tell the newly diagnosed to be strong and rely on the people that love them when they can’t be strong.
I don’t have a favorite inspirational quote. I should probably get one.
My entire life would be different if I weren’t ill. I wouldn’t be retired. I wouldn’t be cast out from my family. I would still have my children with me. How different my life could be would fill a book.
I don’t think being ill has made me a better or a worse person. My illness doesn’t define me. I am who I am.
Today, I don’t know how I feel about the future. Today has been a hard day…ask again tomorrow.
I have met people that have Lupus. I’ve found that they fall into one of two categories, one much more valuable than the other. There are the “poor mes” who only complain about how bad they feel, get into one-up type conversations regarding what they’ve endured, and seem to focus their entire life about all of the things that are wrong with them because of their illness. Then there are the people that are supportive, understanding, and empathetic.
I have lost count of all of the websites that I use for support or information about Lupus. There are just so many really helpful places out there.
The medical system is a joke. I get shuttled from doctor to doctor with no one wanting to do anything, but all agreeing that something should be done. It’s frustrating at best.
When I need a pep talk, I remind myself of all of the people that love me who need me to be a part of their lives. I try to remind myself of all of the things that I have done, and not all of the things that I have left undone.
I don’t have a social life, other than online. I’m afraid to go places and catch illnesses. I get exhausted shopping, or going out to dinner and usually need a few days after to recover. A true social life is something that’s difficult for me to manage and stay as healthy as I possibly can.
Writing is the one activity that I don’t think I would have enjoyed quite as much if I weren’t ill. So is my journal making. I don’t really have five activities, just those two.
My illness has impacted my friends and my partner by putting them on edge. Every time I sneeze, they worry. I hate that it does this to them worse than anything that it does to me.
The most helpful advice that I’ve had is that I should allow myself to be imperfect.
Five things that I’ve achieved despite my illness:
1) I got my passport.
2) I traveled abroad.
3) I retired from the Air Force.
4) I learned to make the best macaroni and cheese in the world.
5) I fell in love.
I don’t really cope very well with stress. It’s something that I need to work on. Stress does bad things to me.
My entire body has been affected by my Lupus. I won’t bore you by making you listen to all of my aches and pains.