Updated: Mar 7, 2021
Have you every been told that you are too young to have an autoimmune disease?
If you have been diagnosis with an autoimmune disease at a young age, then you probably know this statement all to well.
Sadly comments like this are very common for us young warriors.
I was recently reading through posts in an online support group for Sjogren's Syndrome today.
One post caught my attention, the original poster wrote:
"I am in my twenties and this disease sucks already. Has anyone been able to control symptoms and progression that have dealt with Sjogren's for twenty plus years? I'm so depressed thinking of the next however many years of my life going to get worse and worse"
Oh, how I wanted to scoop you up and give you a giant hug!
I hear ya, and I've been there.
I understand how devastating it can be to be diagnosed with a life changing illness so young in life.
You can especially feel cheated when you look at the statistics particularly for individuals with Sjogren's, who are typically diagnosed after the age of 40.
I was diagnosed with Sjogren's at the age of 28. It took me several years to get a diagnosis, and looking back I believe I had symptoms even in my youth.
Since my diagnosis 7 years ago, I've learned a lot. About the illness itself, and also about myself, and how to manage.
Here is a list of 6 things I have learned along the way that have helped me cope at young age with illness:
1. Educate yourself on your illness
The best thing you could ever do for yourself after a diagnosis is educating yourself on your illness.
Having the knowledge of what is happening to your body and what the future potentials are, will help you make a game plan for how to address the illness here and now.
Some ideas on where to find information are:
Charity Organization Websites
Doctor's Office Pamphlets
2. Get Treatment
Work with your doctors to find the right treatment.
Ask lots of questions!
Make sure you are an advocate for yourself.
If you have concerns about medications, symptoms, progression of disease, ask your doctors, get the answers that you are looking for and don't give up finding the answers that you are looking for.
3. Find "Your People"
Being diagnosed at an early age can be devastating at first.
I can be really difficult to see your family and friends without chronic illness living the best days of their life, while you are struggling with simple every day tasks.
That's why finding a good support system is essential (not only for your physical health, but your mental health too!)
I was able to find a local Sjogren's Syndrome Support Group by visiting the Sjogren's Society of Canada webpage.
I was able to meet up with people in my city and talk about my struggles with the illness. This was a wonderful experience for so many reasons.
First, I felt like I wasn't alone in my battle with chronic illness.
Second, I was able to ask specific questions to individuals who have been living with the illness longer than I had.
Third, I was able to find contacts for recommended health care providers knowledgeable about my illness.
Fourth, I walked away with a few product samples that help with my illness (bonus!)
Lastly, I found comfort in knowing I could reach out to this group if I had fallen on hard times.
4. Document, Document, Document!
One of the things I hate the most about living with a chronic illness is the unpredictability of it all.
One day I am living the dream enjoying wonderful time with my family, the next I could be bed ridden and unable to eat.
Once I started documenting some of my day to day struggles, I started to see patterns emerge and I was able to make adjustments.
For example, on days I ate gluten I felt really sick for the next 3 days.
On days where I drank alcohol I had major joint paint the following 2 days.
On days where I went for a long run or did acroyoga, I never slept well in the evenings.
By documenting these things, assessing them and making adjustments, I was able to mitigate and possibly prevent flare ups.
Find your triggers, make adjustments, feel better :)
5. In Some Cases, Remission is Possible
I can't say this is true for every person, or with every illness, but treatment and lifestyle changes can put your illness into remission for some people.
I wholly believe that if you make the effort to take care of yourself and listen to your body, you may slow the progression of the disease.
6. Take Care of You Mental Health
Chronic illness suffers are at higher risk of mental Illness such as anxiety and depression.
I have suffered depression alongside my Sjogren's for years.
One of the best things I ever did for myself was talk to a counselor about my fears regarding my illness (and progression).
If you are still working, many employers in Canada offer a free Employee Family and Assistance Program (EFAP) that offers free counselling.
Speak with your Human Resources department to see if your company has partnered with an organization like HomeWood Health that offers these services.
If you do not have this resource available to you (either not through your employer, or you are not working) there are other free resources available to you.
Here in Canada the Canadian Mental Health Association (CMHA) has many offices across Canada where individuals can reach out to get support.
Your doctor can also put in a referral to free mental health counselling services - although there are typically long wait times for these services.
What I've Learned
Living with a chronic illness totally sucks. However, I've learned that some of these things listed above can and do help you manage the day to day struggle with living with a chronic illness.
If you are newly diagnosed, young, or scared about your illness, I hope you can implement some of these items above to help you on your journey to health.
Health and Happiness,
If you are new to my website be sure to check out my blog here.
If you are newly diagnosed with Sjogren's be sure to check out my webpage here.
If you want to learn more about Sjogren's be sure to check out this webpage.