If you are reading this, you probably know someone living with an autoimmune disease. I’m sure you’ve heard of the common ones – rheumatoid arthritis, celiac disease or psoriasis. But what about the less talked about autoimmune diseases like systemic lupus erythematosus, Sjogren’s syndrome or Addison’s disease? What impact do these diseases have on everyday life? While I will not dive into the complexities of specific autoimmune disease types in this post, I will discuss the basics of autoimmune disease and some lifestyle strategies I have used to deal with my own illness.
First, I think it’s important that you know where I’m coming from. I have a lovely mix of autoimmune diseases or what physicians call an overlap disease. Basically, I have symptoms and test results that suggest multiple types of autoimmune conditions – namely lupus, Sjogrens and arthritis. I’ve seen the specialists, started the medications and gone through the flares – ugly symptoms and all. And I’ve learned a lot about myself and autoimmune disease along the way.
So here’s the basics.
We all know that our bodies have this great defence system, called the immune system, to protect us from harmful substances like bacteria, viruses, cancers or other toxins. In a healthy individual, the immune system recognizes the foreign invaders, called antigens, and produces different cells to seek out and destroy the “bad” cells. In a person with autoimmune disease, the immune system gets all confused. It can’t tell the difference between harmful or foreign substances and healthy tissue. So it goes to town and starts destroying everything in it’s path, including normal, healthy tissue.
The result of the attack is a bunch of strange symptoms caused by the destruction of tissue, changes in organ function or abnormal organ growth. And autoimmune disease does not discriminate. Specific organs (heart, lungs, kidneys etc.) or specific tissues types (like skin, joints, connective tissue etc.) may be targeted. Everyone’s reactions are different and it depends on the specific disease you are dealing with. Common symptoms across nearly all types of autoimmune diseases are fatigue, joint pain, fever and general feeling of being ill. And the symptoms can come and go as they see fit, for no obvious reason at all.
The difficult part is that most people with autoimmune disease look healthy. No one has any idea what is going on inside the body just by looking at them. Especially if you are young, people assume everything is fine. No one would guess that you became exhausted after getting dressed in the morning, or that your hands sting from the cold, or that you constantly feel as though you are wearing a weighted vest.
But how do you explain your symptoms to someone who has never experienced them? Or more importantly, how do you explain autoimmune disease to someone who has never even heard of your illness? This can be incredibly frustrating.
Regardless of what autoimmune disease you are living with, when you tell someone what your diagnosis is, you will likely get a blank stare or a confused look. You will be asked what it is, what that means, how you feel and if they can help you in some way. And your response will usually start by trying your best to explain the disease that you don’t even understand. You will talk about physiology and immune response that you have Googled or repeat some phrase that your doctor has told you. They will ask you questions that you don’t know the answer to – confusing you both. Then, if you want to get into the nitty gritty, you’ll talk about your symptoms, medications and doctors appointments, which is never a fun conversation to have.
For me, if I don’t mention my pain or tiredness, everyone around me assumes that I am okay. And if I do say something, I worry those around me or am pitied. Most days, I just grin and bear it because I refuse to let my illness define me. And if I am going through a period with worsening symptoms, I have learned to take the time I need to recover. I am incredibly fortunate to have a husband who is the most patient and understanding man I know. So if I push myself too hard or am going through a flare, I can take the time to rest and heal. No questions asked.
Here are other strategies I have used to cope with autoimmune disease:
- Educate yourself and those around you
- This is especially true for your partner, family and close friends. It can also be useful to educate your employer. When someone is aware of your illness, they will be more understanding and more supportive, both physically and mentally.
- Seek support from your loved ones
- You are not alone in this. Although you may feel like no one understands what you are going through, know that your friends and family are trying hard to be supportive, in whatever way they know how. So let them help.
- Don’t make your whole existence about your illness
- Stop feeling sorry for yourself and accept the cards you have been dealt. Don’t dwell on the things that you can’t control and start focusing on the things you can. Keep a positive outlook – things can usually be much worse.
- Try and live a healthy, balanced lifestyle
- Stress and your overall health can play a huge role in preventing disease flare ups. Exercise when you are able, eat healthy and minimize daily stressors.
- Know your body
- And listen to it. If you start to feel unwell, rest and recover before it gets worse. And try to learn your unique triggers for flares
- Some days you just need to rest
- Trust me on this one. If you push yourself to hard when you are just starting to feel like garbage, you will definitely pay for it. On the flip side, don’t act like a lump on a log when you are feeling good. Work hard, exercise, be social and live life to the fullest.
My goal for this post was to help educate those who want to learn more about autoimmune disease. Awareness is key. Whether you have been diagnosed yourself or you have family members or friends who are living with it. Hopefully this provided some insight.
Let me know your thoughts on autoimmune disease. How does it affect you or your loved ones?
I look forward to hearing from you,
Disclaimer – I am not a healthcare professional. The advice provided in this post should in no way replace what you have been advised by your healthcare providers.