How I live with an invisible disability

It’s the everyday things I miss. I miss my workout and my running group; I miss the energy to meet up with friends whenever I want; and I miss being able to keep up with my husband and kids on vacation. Heck, even something as simple as not being able to clean my house can bring me to tears. It drives me insane that my pain and tiredness prevent me from doing so much. It’s like my life has been cut short and I’m angry at my body for making a decision without discussing it with me.

But it didn’t happen all at once. It took many years for my symptom constellation to develop and for the doctors to diagnose what I was experiencing. I now know that I have a litany of diseases that often come together and have overlapping symptoms: lupus, Sjogren’s syndrome, osteoarthritis and fibromyalgia. I had two miscarriages in my 20s, and when I had my son and daughter two years apart, I had very difficult pregnancies that required months of bed rest. (pregnancy complications may be common in people with lupus.) I also got migraines. Still, I didn’t question whether any of these issues might be related.

Find out what was wrong

At one point I had severe pain on my right side under my rib cage and an ultrasound showed I had swelling around my gallbladder. My GP thought I might have lupus (an autoimmune disease where the immune system attacks body tissues, causing inflammation and pain in places like the joints and organs) and recommended that I see a rheumatologist. Frustratingly, this rheumatologist took one look at me and saw that I didn’t have a rash (which is only characteristic of some types of lupus) and told me I didn’t have the disease.

More from prevention

Eventually, my migraines flared up and my GP referred me to a neurologist. It turned out this was the second time a doctor had thought I might have lupus, but I couldn’t afford to pay for the entire test, so I didn’t receive a diagnosis.

It wasn’t until my early 40s, when I was hospitalized with sepsis and a kidney infection that doctors said was hospitalized, that tests officially revealed I had both lupus and Sjogren’s Syndrome (another autoimmune disease in which the immune system attacks the body’s cells, tissues and organs). Getting a screen diagnosis — rather than treating each symptom individually — meant I finally got medication to protect my organs and reduce some of my pain and swelling. But there is no medication or lifestyle adjustment to make things better. The fatigue, joint pains, and side effects of the medication are constant and affect my ability to be a thoughtful friend, present mom, and dedicated wife. It even affects my ability to feel good about myself. I often hide behind the fact that I don’t look sick, but a lot is faked with invisible illnesses and that alone can be exhausting.

I’ve also evolved over the past few years fibromyalgia (a disease that causes widespread pain, fatigue, irritable bowel syndrome, migraines, depression, and more). It’s often triggered by other infections and physical and emotional stress, so it’s not surprising that it’s on my diagnostic list. But like my other illnesses, I had to learn to deal with them. For example, I know that if I don’t get eight hours of sleep every night, I won’t get through the next day. I also know that I have to listen to my body and sometimes that means unexpectedly deviating from plans, which hurts me. But if I try too hard, I could end up in the hospital.

melanie hall in front of her house in crete, illinois, smiling slightly

Sarah Rice

living with lupus

I would probably be even more discouraged if I wasn’t self sufficient and able to work around my symptoms. I am a Licensed Clinical Consultant and in my previous job I worked at an insurance company helping patients coordinate their care. This required me to go into people’s hospital rooms and homes while they were sick and help them with their medical needs, which I loved doing. But it also exposed me to diseases my insane immune system couldn’t shake off. So I had to quit this job. However, I am fortunate that I can now work as a therapist in private practice, virtually and in person. The time flexibility I have allows me to be there for my clients and to take care of myself.

I try not to let my kids see me when I’m at my worst. They’re in their twenties now, but I still don’t want them to worry about me. Thankfully, my husband takes care of me and is often the one who tells me to work less or take it easy, which I really appreciate. Going through it all actually brought us closer and reminded us how short life is. So we cherish our time together.

Back to the We Are Not Invisible project

Comments are closed.