March is National Autoimmune Awareness Month, which is very personal for me. You see, my son is an #AutoimmuneWarrior. There are over 50 million people in the United States currently living with an Autoimmune Disease, which works out to be about 1 in 5 people. This means you likely know an #AutoimmuneWarrior too!
Understanding Autoimmune Diseases
Your immune system develops defenses (antibodies) to attack bacteria, viruses, toxic substances, cancer cells, and foreign blood or tissue that enter your body (antigens). However, when you have an Autoimmune Disease your immune system erratically attacks both healthy tissues/organs in your body and foreign substances (antigens).
There are over 100 different known Autoimmune Diseases. It is not uncommon for people to have more than one Autoimmune Disease. They can impact different body systems including blood vessels, skin, joints, muscles, red blood cells, endocrine glands including the thyroid and pancreas, GI tract, and connective tissue.
Common symptoms of Autoimmune Diseases can include fatigue, skin pain/rash/hives, fever, headache, and joint pain. Additional symptoms may be present in the systems being attacked, such as stomach, mouth, throat, or eyes.
Our Autoimmune Story
Like so many others, my son too has several Autoimmune Diseases. He was diagnosed with Crohn’s disease about 4 years ago. It wasn’t too long after that he started to develop pain in his joints (arthritis) and muscles too. The pain would eventually get so bad that he had to stop soccer and distance running. Thankfully, he loved water and was also a competitive swimmer.
Fast forward a few years and he began to develop skin issues too, beginning with psoriasis on his fingernails and toenails. Over time he developed other skin issues including rashes, sores, and hives, with the most recent including painful reactions to water. His doctors worked hard for several years to keep him swimming. However, last month he decided the discomfort was too much and said good-bye to the pool.
Being an autoimmune warrior though, he is a fighter. He will greet you with a smile and tell you life is fine, because this is his normal. In reality his life is anything but normal:
- taking numerous medicines daily,
- getting infusions every 4 weeks,
- eating a very restricted diet, and
- having a compromised immune system, sore joints and stomach, headaches, light sensitivity, extreme bouts of fatigue, and skin issues.
However, this is his “normal” life, as it is dominated by Autoimmune Diseases.
Supporting an Auto-Immune Warrior
This is not only his story. There are tons of other people with Autoimmune Diseases out there. Each has a slightly different story, but they each fight an internal battle you can’t see. Like my son, they are warriors – each trying to live the best life they can!
Many sufferers of autoimmune disorders struggle because other people cannot see their pain and fatigue. Therefore, it is not uncommon for people to lack understanding or support. When someone tells you they have an autoimmune disease, they need you to:
- Acknowledge their sickness and ask how you can help.
- Support and accommodate alternative therapies they may be using (such as specialized diets), without providing your two cents on things you think they should try.
- Be flexible with plans and understand that sometimes going out is too tiring. Be willing to adjust and bring the fun to them (movie night, puzzles, etc) or even reschedule if they prefer.
- Offer to help – picking up prescriptions, running errands, brining a meal, or taking their kids so they can have a break.
- Make efforts to protect them by washing your hands every time you are around them and staying away or wearing a mask if you are ill. (Activating their immune system to fight colds can be disastrous because it ends up attacking their healthy tissues and systems in their body too.)
- Be there to listen if they just need a safe space to talk and complain.
- Advocate for them by helping others understand their needs and limitations.
As a health educator, I strive to educate people about living a healthy lifestyle and successfully managing their medical conditions to live their best possible life. In honor of Autoimmune Awareness Month, I encourage you to support the warriors living with these silent diseases. I promise you know a few. Simply acknowledging how brave and strong they are will likely mean the world to them.
My Autoimmune Warrior son said it best…. “My diseases will not define me!”.
Thanks for supporting my son and the other #autoimmunewarriors out there by sharing on your social pages. Together, we can help educate people on Autoimmune Diseases and spread the word of how we can be more supportive to the people we know and love who are suffering silently with Autoimmune Diseases.
Not to be outdone, his little sister has her own story to share too. You can read about her health journey here.
Reference: Medline Plus: Trusted Health Information for you. Autoimmune Disorders. US National Library of Medicine. https://medlineplus.gov/ency/article/000816.htm Accessed March 8, 2019.