Michelle
Meet Michelle from Lansing who was recently diagnosed with lupus.
Michelle’s Story:
I had been seeking a diagnosis for my chronic fatigue since I was 18. I wasn’t diagnosed with lupus until I was 27. I went to 3 or 4 different doctors, which half of them chalked my chronic fatigue and dizziness up to depression and lack of sleep which I knew wasn’t the case. They tried to educate me on proper sleep habits and urge me to try antidepressants to ease my chronic fatigue. I knew it was more than just a lack of sleep or a mental illness. I shouldn’t feel dizzy, faint, exhausted etc every day.
Every doctor said they ran “all the tests” and nothing was coming up. What more could I do if they are telling me they did all they could? I almost gave up asking for help until I saw a creator online posting about her symptoms that were very similar to mine, and in the comment section people were giving advice on what tests to run. One test that was mentioned was a full autoimmune panel. My husband, and biggest supporter, urged me to ask for these new tests. He was witnessing first hand how my mystery symptoms were affecting my quality of life and he wasn’t going to let me give up advocating for answers for myself. When the results of my autoimmune panel came back it was undoubtedly lupus.
I was so relieved to have a reason for all of my symptoms. I didn’t have to anxiously worry that I wasn’t getting treatment for my symptoms anymore. Because, now knowing it’s lupus I could finally get help!
In the last 10 months that I’ve been diagnosed, I’ve faced many challenges. I had to cut back from full time, to part time work as to not fall into constant flares. Even working part time is really hard for me. The days that I work I am unable to do anything else when I come home. I am so unbelievably exhausted, my body is vibrating with exhaustion and discomfort, holding a conversation with my husband feels impossible. All I want to do is sleep. I have had friends who don’t understand what I go through and expect me to push through so I can show up for them. They don’t understand that in doing so, I will hurt myself more. I’ll feel faint and dizzy while trying to hold a conversation and inevitably get an anxiety attack trying to hold it together when I should be at home resting. It’s impossible to show up when all your body wants is rest. If I push myself past my limit I will pay the price later. I wish others would give people with invisible and chronic illnesses more grace. They may never understand what we go through, but it doesn’t mean they can’t try. Don’t expect so much from us, we are trying our best and just want to rest guilt free when we need to.
My blood tests show markers for lupus, vasculitis, a gluten autoimmune response, pre-diabetes and possible Sjögren's.
What is one piece of advice you would give to someone who is newly diagnosed?: Integrate new lifestyle changes! Stay out of the sun, wear sunscreen daily, take on a new anti-inflammatory diet, limit your activities as to not flare up.
What is one misconception you wish you could change about lupus?: Just because you sometimes can’t see our illness, doesn’t mean it isn’t there. Often, people who are struggling hide their struggle. Everyone is fighting something, give more grace to others.
What brings you joy?: My husband brings me joy, I’ve never been accepted and loved wholeheartedly the way he does for me. My dog brings me joy, he is so emotionally intelligent and the biggest sweetie in the world. Sewing and embroidery bring me joy. Nature brings me so much joy.