Your doctor has finally put a name on the symptoms you’ve been experiencing and now you have to learn to adjust to life with an autoimmune disease.
You’ve been told a few basics about your newly labeled disease and listened to the announcement that there is no cure. It may go up or down but either way, you will live with it forever.
Realizing you have a chronic illness is a bit shocking, I know. I’ve been there.
Now that you’re home from the doctor’s office the first thing you’ve probably done is google it. As you’re thinking about it, or telling curious friends the name of your disease you’re probably thinking of or being asked questions you don’t know the answer to yet. You’re also probably hearing a lot of, “at least it’s not cancer“.
With your diagnosis, you have entered the mysterious world of chronic illness – where there are always more questions than answers.
The good news is that you’re not beginning a journey down an untrodden path. Many have gone before you and looking back we are able to offer you some tips for adjusting to this new way of life.
1. Educate yourself about your condition.
Welcome to your new hobby of being a professional patient. Most chronic illnesses are very difficult to understand and treat. The best way to battle your disease is to know what you’re dealing with. You will be dealing with this the rest of your life so you no longer have the luxury of simply accepting things at face value. You need to dig deeper and come to understand it.
You want to be able to offer valuable insight into your treatment plan to help your doctor determine what is best for you
- Spend time reading about your disease from legitimate information sources.
- (Look for a list of recommended books at the bottom.)
- Learn about your specific autoimmune disease
- Learn about autoimmunity as a category of disease
- What makes you susceptible
- What triggers it
- What remission looks like
- Discover patient advocacy group
- Not sure where to start? Check out the autoimmune resources tab in the menu.
- Don’t see what you need? Contact me and I can help direct you.
- Investigate treatment options
- Learn about and participate in patient-centered research
- Become knowledgeable about your medicine and other dynamics of your illness.
- Connect with the huge chronic illness community online . The people who blog, connect groups, raise awareness, advocate, and reach out with social media, are in my experience, genuinely caring people who really want to help others on their chronic illness journey. You will find an amazing network of support that will be happy to share what has helped them along the way.
2. Recognize your limits and learn to say no.
Most people have no idea what the word spoonie means until they become one. A spoonie is someone who has limited energy resources because of chronic illness. It has become a social phenomenon among the chronically ill. You can read how we got the name spoonies here.
Learning to live with chronic illness means learning how to manage life with your symptoms.
You will have to learn where your limits are and accept them. This means getting really comfortable saying no. Your autoimmune disease will not forgive you easily for pushing yourself past these limits.
This doesn’t mean that you can’t do the same things you have always loved, it means you need to plan to spend your energy wisely. Figure out what matters and start saying no to wasting energy on the rest.
3. Accept help from others.
Accepting help does not mean that you are unable, unwilling, or unmotivated. It means that you are utilizing your resources to manage your chronic illness to the best of your ability.
Whether help comes in the form of someone actually doing something to save you energy, an offer of support, or advice from an experienced spoonie it is always wise to consider it.
Autoimmune disease is a constant war against your body and you are going to get tired during the battle. It will take the help and support of others at times as you deal with it.
Accepting help is different than accepting all sorts of the crazy advice and opinions you will get from people. The weird miracle cure in a copper bracelet or new herb that their sisters cousins friend’s mom used and worked doesn’t exist, although there is a lot you can do to help manage your symptoms like eating right.
Help is when people are doing things to make your life easier not making their life easier.
4. Build fun into your life.
Autoimmune disease is a very serious chronic illness that will change the way the think and live in a lot of ways. The weight of it all can easily crush out the fun and lighter side of life if you let it. Build little moments that feed your soul into your life. Make sure to enjoy your life still and have fun. Even when you are exhausted and hurting there are still things that can lift your spirits.
- Read a really good book
- Netflix binge
- Talk to a friend
- Chat with other spoonies online
- Buy really nice pajamas and bedding to enjoy on days in bed
- Splurge on the fancy tea or coffee
- Listen to an audiobook
- Have a pajama party movie night with your kids
- Start a blog about autoimmune disease!
Whatever you find fun, don’t let it get lost in the mess of autoimmune disease. Hold on to it and make it a part of your life even if it means you have to alter it to still do it.
5. Focus your physical and emotional resources on those things that matter most.
Nothing gets your priorities in line like coming face to face with your own mortality through a scary diagnosis. The hard truth is, autoimmune disease does change you as a person because its symptoms affect every aspect of your life. We all believe that being an autoimmune mess won’t become part of who we are but I challenge you to show me how something that invades every part of you doesn’t.
There is a primitive intrinsical connection between our emotional health and our physical health that occurs with autoimmune disease. We know that high-stress levels impact the function of the immune system. This is particularly true when the immune system is dysfunctional. Stress will cause your symptoms to flare up without fail.
To stay well, you have to learn how to deal with the things that matter the most and let the rest go. If you try to continue heaping your plate full with things that are not top priorities you will find yourself stressed and sick. Your body will no longer handle physical and emotional stress well. Accept this and learn to focus on what matters, it will be stressful enough without adding the rest!
6. Share your gifts and talents with others.
While it is perfectly acceptable to take some time to lick the wounds a tough diagnosis leaves and to start focusing more on taking care of yourself, it does not give you a license to become self-centered. It is easy to withdraw into our own little worlds as we start centering our lives around how things make us feel. Needing help, support, and encouragement doesn’t excuse you from giving to others.
You have gifts and talents that other benefit from. Don’t fool yourself into thinking a chronic illness like autoimmune disease means you can’t give them or people don’t need them. I would go as far as to say that because you have an autoimmune disease, you have something special to offer the world. Anyone can sound good when life is great. It means nothing. When you are dealing with something difficult like an autoimmune disease, and you still sound good, now that is something that is worth hearing. Share the stuff that makes you awesome and elevate others with it. In return, you’ll feel good too.
Autoimmune Messes Recommended Reading List
- The Autoimmune Epidemic – Donna Jackson Nakazawa
- Autoimmune Diseases – Jacqueline Langwith
- Women and Autoimmune Disease – Robert G. Lahita
- Living Well With Autoimmune Disease – Mary J. Shomon