My Story
In 2013 I was diagnosed with an autoimmune disease, Primary Biliary Cholangitis. I had been feeling unwell for a couple of years to the point I was afraid I was going to die without knowing what was wrong with me. Now, years later, I am alive and learning to cope. Though, I have my ups and downs.
Because of the difficulty getting a diagnosis and adapting to the changes in my health and my quality of life, I am sharing my story, as much as I remember of it, and hopefully will help others as they learn to live with autoimmune disease(s). I am not seeking sympathy or pity, but I seek understanding and want to share the knowledge I have gained. I want to be able to help others.
I am not an expert on autoimmune diseases. I don’t know about all of them. I know a little bit about the two I have and a little bit about some of the others. Nonetheless, I know how I feel, and I am guessing many people have similar frustrations and symptoms. By sharing I hope to alleviate some of the existing frustration, pain, and misunderstanding.
What is Autoimmune Disease?
The causes of autoimmune disease are not well understood. Our immune system, which is supposed to protect us against disease, goes haywire and attacks healthy cells instead of unwanted viruses and bacteria. A dysfunctional immune system is the basis of all autoimmune diseases despite their many differences.
With over 80 identified autoimmune diseases having been identified by scientists I am not going to attempt to cover them all. Some with which you may be more familiar include:
- Type 1 Diabetes
- Rheumatoid Arthritis
- Multiple Sclerosis
- Lupus
- Inflammatory Bowel Disease
- Hashimoto’s Disease
- Grave’s Disease
- Psoriasis
I have been diagnosed with Primary Biliary Cholangitis and Sjogren’s, and also have symptoms of Reynaud’s, which also might be an autoimmune disease. Having more than one autoimmune disease is not uncommon, as 25 percent of patients with autoimmune disease have more than one.
My Story
Symptoms and Diagnoses
One site I visited states that those living with autoimmune disease often feel alone with their disease. Though support is often there initially and when a crisis occurs and hospitalization results, the support eventually fades. This makes sense, as the symptoms and the illness does not go away. I sometimes find it hard to cope, how can others?
Until I started to feel unwell, I had been very active: work, school, gym, community, family, and socializing. Though I had frequent respiratory infections I tended to work through those and carry on as though nothing was wrong. At about 60 I started to feel exhausted. No amount of sleep and rest would eliminate the extreme fatigue. I was working full-time teaching nursing and working on my doctorate. Working full-time and going to school was not unusual, I had been doing this for 20 – 30 years so it was not new. After a full day at the bedside with my students, I needed two to three days to recover from the extreme fatigue I was feeling. I also found I was getting even more respiratory infections, and they were lasting longer. Overall, I felt unwell with numerous little things like sore, dry eyes, muscular pain, unrelated to my workouts, and general aches, but the exact cause eluded me.
I have a history of depression going back to my teens. When I consulted my family doctor it was suggested that I was burned out or I was depressed. What I was feeling was not like any depression I had ever had in the past. Maybe I was burned out, but I didn’t think so. As recommended by my doctor I took time off work and saw a psychologist. I started to feel a bit better. Then I returned to work, and at the suggestion of my psychologist got a personal trainer. I loved going to the gym, and always have. But it seemed so much harder than ever before. I soon found I wasn’t recovering between workouts, and my Personal Trainer insisted on longer stretches between workouts. My health deteriorated and I needed more time off work. My extreme fatigue and general feeling of being unwell was creating havoc with my job, I knew I wasn’t at my best, and in my home life. I often didn’t have the energy to accompany my husband to events. Though I didn’t feel I was depressed, I was well on my way to being depressed.
I can’t remember the details, but there was some confusion, and a consult was arranged with a hepatologist was organized, which became a blessing. Someone had thought I had hepatitis thus, I got scheduled to see the specialist and as we talked, she realized I did not have hepatitis but likely had an autoimmune disease and ran the necessary tests. Results came back confirming Primary Biliary Cholangitis. I got started on appropriate medication. I was very relieved to have a diagnosis. However, I had a lot to learn.
The dry eyes and mouth were a nuisance, the itching was torture, and the fatigue was overwhelming. I had trouble adapting but was happy to know I was not crazy or dying. I could no longer work full-time as I would end up ill. Adjusting to not working was emotionally very difficult. I loved nursing and teaching and had hoped to continue into my 70s. Alas, that was not to be the case.
Life continued. In 2019 I was diagnosed with a couple of cancers and needed surgery and chemotherapy. Shortly after my chemotherapy was completed (2020), I developed chest pain, thinking I was having a heart attack I went to emergency. As it turned out I was not having a heart attack, but I had peri-carditis. A brilliant cardiology fellow tested me for Sjogren’s, another autoimmune disease. People with Sjogren’s sometimes develop pericarditis. The symptoms of Sjogren’s are similar to Primary Biliary Cholangitis (PBC), dry eyes and mouth, itching, fatigue, and muscle and joint pain. Off to another specialist and treatment was begun.
My Journey and Quality of Life
I had a great deal of difficulty adjusting to the slowing down. I could no longer take care of my home and yard to my liking. Every time I started an exercise routine, I would end up exhausted and in pain. It would take me anywhere from a few days to a week to recover. Then I would try again. And the same thing would happen. My doctors recommended exercise, and I know it is important, so I kept trying.
My quality of life had deteriorated. I could no longer socialize the way my husband and I both enjoyed. I remember cooking Christmas dinner for the family and ending up so tired and in such pain that I was not able to join the family to eat. I was on the sofa in pain. Of course, my grown children and husband had helped, but it was still too much. Vacations became a problem because once again I was too exhausted to do all the things we enjoyed, just the travel part required a few days to recover.
We hired help for the house and yard. We are so fortunate to be able to afford to do that, not everyone is so lucky. But I especially missed the time in my yard and the socializing that we enjoyed. Despite getting help with these things there was still a lot of adjusting and many days spent in pain feeling exhausted. Dinner out with friends often ended early for me.
I chatted with my family doctor and got a referral for mental health support to help me adjust to what needed to be my new way of life. This was helpful, but I still struggle with wanting to do more and suffering the consequences when I do too much.
I continue to struggle with feeling lazy, though I know I’m really not, and that I am doing the best I can with what I have at the moment. Some days I get lots done, but that usually results in a few days of pain and extreme fatigue. But I also know that is a choice I have made.
Changes to How I Live
There are probably more changes than I remember. Most significant is having to retire and not being able to have the social life with my husband that we had enjoyed for so long.
I miss my work. I loved being a nurse and I loved teaching nursing. My interaction with patients and students was a highlight of my career.
My husband and I continue to socialize but not as much as we once did. I find travel very painful, and it causes my husband a lot of emotional pain as he sees my discomfort. However, we are adjusting. And again – some days are better than others. Nonetheless, I remain grateful to be alive, to have a wonderful husband and family to support and care for me, and to be able to enjoy my home and dog. Yes, I have had to slow down, life has changed, but for me, it is better than the alternative.
Though many people are able to carry on and achieve their life goals I have not found that. I also know that I am better off than many others. Though my symptoms vary from day-to-day I am able to function quite well with some planning. I have learned more about self-care and what that really means – a healthy diet; adequate, good quality sleep; regular activity; and social and emotional support.
I do life, wellness, and leadership coaching. I have immersed myself in learning about essential oils and aromatherapy. I have been on a spiritual journey and have learned about myself. I enjoy my periods of meditation and have found comfort in repeating affirmations. I have come to realize the importance of positive self-talk and training the brain. Neuroplasticity is another area that I have delved into and found very helpful.
One of the first things I did following my diagnosis was embark on learning about HeartMath. I am a certified coach, but most importantly my practice has helped me learn how to maximize my energy and make the most of a variety of daily situations. We all have different experiences in life and each of us needs to find what works for us – one size does not fit all. But I do encourage you to be curious and find what works best for you.
Treatments
Obviously, with so many different autoimmune diseases there are oodles of treatments. Seek medical guidance and seek out support groups. There is a great deal to learn. Regardless of medical treatments, self-care, including nutrition, sleep, activity, and mental and emotional care remain important.
Don’t hesitate to seek out alternative therapies and treatments. Do what is important to you. Massage, exercise, aromatherapy, yoga, acupuncture, and changes to your diet, are all possible areas you might want to examine.
You might be prescribed medications and need numerous over-the-counter (OTC) medications to cope with a variety of symptoms. Discuss medications with your healthcare team. Make sure that what you choose for medications, treatments, and care will not cause harm. Be safe in your self-care.
Resources
These are just a few resources to get you started. Don’t hesitate to search for your specific disease.
If you would like more guidance and support, contact me via my website: www.leadnurses.com
Autoimmune Association: https://autoimmune.org/disease-information/
Global Autoimmune Institute: https://www.autoimmuneinstitute.org/
Johns Hopkins: https://www.hopkinsmedicine.org/health/wellness-and-prevention/what-are-common-symptoms-of-autoimmune-disease
National Institute of Environmental Health Sciences: https://www.niehs.nih.gov/health/topics/conditions/autoimmune
National Organization of Rare Disorders: https://rarediseases.org/organizations/autoimmune-association/