Living with an autoimmune disease often means managing a variety of symptoms that are invisible—but debilitating.
By Monica Richey, MSN, ANP-BC/GNP
Over the past 20 years, research related to the management of autoimmune diseases has provided welcome knowledge and treatment strategies. Despite these advances there remains a lot we don’t know about the wide range of what are referred to as invisible symptoms of autoimmune diseases.
According to the US Centers for Disease Control and Prevention, autoimmune disease affects about 5 to 8 percent of the US population, or 14 million to 22 million people; women comprise approximately 78 percent of those affected, though the reason for this high rate of incidence among women is unclear.
Autoimmune diseases are marked by an array of different signs and symptoms; some, like rashes and swollen joints, are readily apparent, but there is a whole secondary constellation of symptoms that are rarely mentioned nor easily treated.
Fatigue, brain fog, hair thinning, headaches, photosensitivity, depression and anxiety, and overall joint and muscle pain and stiffness are just some of the symptoms patients live with that aren’t outwardly apparent. Patients with autoimmune diseases can also develop secondary fibromyalgia and chronic fatigue syndrome.
These invisible symptoms make autoimmune diseases difficult to manage and control. While some providers are providing appropriate care and effectively helping patients track these symptoms, they are often overlooked. Such symptoms can negatively affect almost every relationship a patient has and can lead to social isolation, which in turn leads to worsening depression and anxiety. When this happens, a person’s quality of life can be significantly affected, as can the lives of his or her loved ones.
In the face of the challenges that these invisible symptoms present, there are opportunities for patients to take control of their well-being through open, honest communication and proactive steps to seek support.
Tips for Understanding Invisible Symptoms and Getting Good Care
1 Know that these symptoms can be a sign of a more serious condition. Often the invisible signs and symptoms you experience can be the first sign of autoimmune disease; unfortunately, they often go unnoticed, unrecognized, or misdiagnosed. This can make the diagnosis of autoimmune disease even more difficult and lengthy, causing the disease to go unchecked for a longer period of time. This can not only worsen the outcome but also cause severe disability. Pay attention to symptoms; if you believe they might be related to an underlying illness, seek care from a qualified physician.
2 Provide your care team with honest, detailed descriptions of your symptoms. Most patients downplay their symptoms, even to their providers, which can prove disastrous. Remember that you are in charge, and the provider needs to know what is going on. If he or she does not ask, it is up to you, as the patient, to provide a detailed account; failure to do so can result in undertreatment and worsening disease.
Remember that these symptoms are very individualized. Some patients have significant brain fog; for others fatigue will be worse. It is also important that you tell your provider what your most bothersome symptoms are.
3 Pay attention to your mental health as well as your physical symptoms. Never forget to mention symptoms of depression and anxiety, which are common in patients with a chronic disease. The ups and downs of disease activity, the unreliability of what tomorrow will bring, and the changes in lifestyle and relationships can bring on these issues. If you are experiencing anxiety or depression, your provider can refer you to a therapist, where you can benefit from an array of different available treatments, from medications and cognitive behavior therapy to meditation and other modalities. Choose what you think will work best for you.
4. Track your symptoms. I always ask my patients to keep a diary, in which they record and rate their symptoms as green, yellow, or red, according to their severity. This helps them understand and identify triggers and can also help them predict when a flare-up is imminent. If you go from green to yellow, something is happening that needs your attention.
5. Find a support group near you. I often hear from patients that they are afraid to talk to their families about their symptoms; they feel like they are complaining too much. A support group can be a great outlet for sharing; some patients find it easier to open up when they are among others who can relate to their experiences.
To find a support group near you, search online for local chapters of national disease-specific support and advocacy groups, such as the Arthritis Foundation at arthritis.org. Some hospitals offer support groups, and you can ask your provider about local options. If available, go ahead and join a group—beyond the support of fellow patients, such groups often offer education that can provide insight into the disease and treatment options. Some support groups also allow friends and family to attend, which can provide valuable insight and support for your caregiver.
6. Understand the impact on your loved ones. The invisible symptoms of autoimmune diseases not only are hard for patients and providers to treat and understand but also present a challenge for family and friends. Friends often can’t understand the severity of symptoms that they can’t see, leading them to respond to a patient’s concerns with something like, “But you look so good!” This can leave patients feeling completely misunderstood and as though their feelings and pain have been dismissed, which can cause a rift between friends.
Managing symptoms can also cause severe stress in family and partner relationships, as well as in the workplace, where patients may be perceived as lazy or where any discussion of their invisible symptoms may be interpreted as an attempt to avoid work.
7. Find a way to describe your illness that helps people understand what you’re experiencing. Sometimes it is hard to explain invisible symptoms such as fatigue. I once had a patient tell me how happy she was to have had the flu; I was curious and asked her why. She told me that she always tried to explain to people that her fatigue was like having the flu, but after getting the flu, she was now able to tell people that her lupus fatigue was 100 times worse than having the flu. Believe me when I tell you that even I understood that! So use examples that people can relate to.
8. Know that your symptoms are real, and find good coping tools to manage them. Invisible symptoms of autoimmune disease can be challenging to manage. Here are a few tips for coping with some of the most common.
- A good rule of the thumb for fatigue is to listen to your body; do not overdo it. Pace yourself, and if you need a nap, go for it. During flares your fatigue will be a lot worse, so learn to respect it. Believe it or not, moderate exercise, like stretching and walking, is great for minimizing fatigue: it releases endorphins that can help relieve not only your fatigue but your joint pain too.
- Brain fog, or cognitive dysfunction, can range from short-term memory loss to problems with concentration, attention, and visual perception. When discussing this symptom with your provider, be specific about what affects you. While there are a few medications available, sometimes just making an effort to focus on one thing at a time is most effective. (We all pretend to be great multitaskers, but the truth is, our brain is not very good at that!) One simple way to help manage brain fog is to go old school and write things down. As easy as it sounds, it’s effective—and often more so than trying to track things on multiple devices or apps. Some patients also find that brain exercises and games, like Sudoku or those available on Lumosity.com, can be helpful, as well. Medicine should be your last resort.
- Hair thinning and hair loss can be quite devastating, and many autoimmune diseases and some medications can cause that— methotrexate being one of the usual suspects. If the disease is active, there is not much that can be done, but try taking a good hair-and-nails supplement. It will not prevent the hair loss, but it will help your hair grow back faster. And don’t expect such supplements to act quickly. Hair and nails are dead tissue, so the supplement will act on the new growth; give it a good six months before giving up on it.
- Joint and muscle aches are common. For an easy, soothing solution, rub some high-quality lavender oil on your affected muscles before bed. It has some anti-inflammatory effect and can help with those stubborn aches that do not respond to therapy. The lavender aroma will also help you sleep better.
The bottom line is that you must learn to identify and embrace your disease, with all its unique symptoms; then you must communicate your symptoms to your healthcare team in very clear terms. If you think you are not being heard, redirect your provider’s attention to you, not to the lab report she might be searching for answers. Be honest with family, friends, and co-workers; you will be surprised at how understanding they can be and how common autoimmune diseases really are. Learn to respect your body and, most importantly, enjoy your life in every way you can.
Monica Richey has been a nurse for the last 13 years and worked in rheumatology for the last 10 years. She is the nurse Practitioner for the division of Rheumatology at Hospital for Special Surgery. She has developed several different educational and clinical programs for patients, including the Cardiovascular Disease Prevention Program, the Preventive General Health Assessment and the Contraception Program for Lupus and APS patients. She has developed several educational lectures for patients and nursing staff as well. She is a clinical instructor for Hunter College and Stony Brook School of Nursing, where she mentors and precepts nurse practitioner students. She recently has also accepted the position as the Patient Care Director for the division and oversees a staff of 20 nurses and PCA’s.