You’ve probably heard it before…and when you are suffering from an “invisible” chronic condition, it might not necessarily be heard as the well-meaning compliment it is intended to be.
Friends and family, they all mean well, but anyone who has dealt with the kind of pain and fatigue that doesn’t show on the outside, knows this type of comment can come as a blow. This one statement can cause a lot of frustration, especially when we are dealing with friends, family and even doctors.
Sadly, people in our shoes, often have to convince, even doctors, of the pain and fatigue we are experiencing. This can be terribly demeaning and even confusing. For them, it simply doesn’t add up when what they see in front of them is a seemingly ‘healthy’ person. This is even more true when, those of us with these diseases, are young and in the prime of our lives.
Unfortunately, we have to find a way to deal with wearing our diseases on the inside (along with our badges of courage!). Here are a few things I have found to be helpful over the years. We all go through the different stages of grief while coping with our illnesses, so it’s important to find support that’s right for you whether you are dealing with denial, anger, bargaining, depression or acceptance. While looking for support of your own, you may also find yourself acting as a source of inspiration for someone else along the way.
- Forums: I love the Meniere’s facebook group as well as the Lupus group these brave people have loads of great advice and help nurture one another when times are hard. There are loads of other forums across the internet, find one that promotes positivity, which is so important. We’d also love to have you join us on our Nutrify Retreat Page, there you’ll receive tons of support and you don’t have to hold back if you have questions, we’ve heard them all and look forward to lending a hand (or a shoulder).
- Support-groups: Most towns across the country have support groups for things like Fibromyalgia and Lupus, but if you are suffering from something a little more rare, it can be hard to find fellow Chronic Illness Comrades. That’s where the Internet can be so helpful. There is a site called MeetUp.com where you can start your own group in your area. It’s an opportunity to let others know they aren’t alone in their battle.
- Sites Devoted to People Like You: Check out sites that are specifically designed to support those with chronic illness. I personally love the vibe over at ChronicBabe, the site is filled with great tips and tricks for those dealing with chronic illness, all with an inspirational and uplifting tone – always LOVE that!
These things have all come in handy for me over the years. I also do my best to educate people every chance I get about autoimmune disease. In doing so, I rarely have an interaction that doesn’t include someone saying “oh, my ex had that”, or “my sister suffers from that too”. Tada!…instant camaraderie!
Unfortunately autoimmune disease is on the rise, which means more and more of us are around every corner. So, I encourage you to speak up and hold your head high, because the next person you meet might just be going through the same thing you are.