(Ep. 3) Why Having an Autoimmune Disease Is Lonely: 3 Strategies for Overcoming Isolation
(Ep. 3) Why Having an Autoimmune Disease Is Lonely: 3 Strategies for Overcoming Isolation
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Despite nearly 100 autoimmune conditions in existence, those living with an autoimmune condition often don’t have anyone to depend on who understands or can empathize. In this episode, learn why autoimmunity is lonesome and glean tips for overcoming loneliness and isolation if you have an autoimmune illness.
Episode Notes:
What is certain about autoimmune disease, is that your life will change. But feeling lonely doesn’t need to be a part of those changes. But it’s important to stay open. Remain flexible. And remember that you’re never alone in coping with your autoimmune condition.
Here are three tips for overcoming isolation and loneliness:
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- Be willing to talk with your family and friends about your condition. Be honest and forthright. Don’t shy away from how you feel on a daily basis or if your well-being changes from day to day. Also, if you know what triggers your autoimmune symptoms, such as certain foods, stress or inadequate sleep, it’s important to let them know if those issues arise. Simply saying, “I didn’t get enough sleep last night so I’m going to need to take a nap at some point today” should be enough to communicate how you’re feeling that day. This also helps them understand what you’re going through.
- Look at your condition from their point of view. When you’re tempted to get upset at a family member or friend for not understanding (or remembering) your health condition, it is important to extend them some grace. Remember that they may also be going through their own life challenges and their mind is preoccupied with issues happening in their life. So in times of your own distress, when you’re expecting a kind word or support from someone else, remember that and see things through their eyes. Think of it this way, too, if your condition happened suddenly and you’re still figuring things out for yourself, how much more are your loved ones? They are also trying to understand what this illness means for you and what it could potentially mean for your family and your lifestyle. Again, extend your family members some grace.
- Rearrange family responsibilities. When you’re coping with autoimmune disease, often your symptoms include fatigue or low moods or a diminished capacity to do the things you once did with gusto, such as cleaning the house or working full-time. Embracing this new normal may require you as the one with the autoimmune condition to let go of previous responsibilities, cut back on your usual workload and delegate those responsibilities to someone else. And this may be a temporary necessity until your health is restored. No one is suggesting this will be your way of life for the rest of your life.
No matter what, it is important to once again communicate what you’re able to handle. For instance, if you usually drop off the kids to school, but you’re having a hard time getting out of bed in the morning, then ask your spouse or close friend for help. If you usually cook meals everyday, switch things up and cook a few times a week and cook enough so that leftovers can be eaten the next day. Or accept meals from friends and family.
Are you someone supporting someone with an autoimmune condition?
I asked my husband, as the person who supported me in my wellness journey, if he had any perspective to share.
He suggests that loved ones should be willing to validate your new diagnosis and to reaffirm your love for the person who’s been diagnosed with the autoimmune condition. He also says that family members be open to any lifestyle changes that come with having an autoimmune condition. For instance, it would go a long way if you supported them in their new eating habits and be willing to go on the journey with them, he says.
Final thoughts…
Having an autoimmune condition gives you an opportunity to lean on other people. You don’t have to do it alone. But for many people, this is new territory. You may be used to doing things yourself or being independent. I get it, but in this current season, being gracious with yourself is essential.
Look for people in your life who want to extend a helping hand (if they can) and ask for help. Just remember that they will need to know what kind of help you need.
That said, be your own best friend, be kind to yourself and cut yourself a break as you start making changes in your life that will promote your body’s healing at the root cause.
