I was born with a genetic, chronic pain condition called Ehlers-Danlos Syndrome. Through the years, I've been able to connect with many others who suffer from invisible, chronic or mental illnesses and many of us have dealt with similar frustrations or misunderstandings regarding others' interpretations of our conditions.
Of course, it's our responsibility to choose forgiveness and understanding over offence, especially when most people have good intentions but lack understanding of our difficulties. I can't help but wonder how many good souls in our churches are looking for ways to show love and support to their chronically and invisibly sick friends and family but just don't know how. Here are a few Do's and Don'ts, gleaned from the experiences of my friends, family, and I.
1) Do talk to us about our illness.
Most people are open to discussing their illnesses with a caring, genuine friend. It means a lot to us that you care enough to learn about our sickness and how it complicates our lives. Understanding can go a long way in closing the gap between the chronically ill and those who have never experienced it. That gap can feel like the Grand Canyon when we feel alone in our plight.
The Relief Society President in my last ward took the time to visit me and ask about my illness. When I told her it was called, "Ehlers-Danlos Syndrome," she realized a new sister in the ward also had EDS. Because she learned about both of us and even remembered the name of our very rare disorder, she was able to pair us up for visiting teaching which spurred an automatic friendship. Neither of us run into many people with EDS so it felt like a miracle to not only be in the same ward but to also connect through visiting teaching. We were both so grateful for how our Relief Society President cared for us.
2) Do not skip over us for callings or service opportunities just because we're sick. Everybody's different and obviously, certain people can not do certain callings. But if you're unsure, ask us anyway.
In one ward, I was called to be Young Women President, which is fairly time and energy-consuming. I knew it would be a challenge for me while dealing with my own health problems, but I felt so much peace that the Lord knew my situation and wanted me to serve those girls. A few weeks into my service, my kind bishop called me in to see how things were going. A friend of his, my sister-in-law had told him about my sickness and he was so worried about me saying, "I wouldn't have called you into this position if I had known." I was so completely touched by his compassion for me but I reassured him, I knew God would enable me in my calling. I even explained that I hadn't told him about my chronic pain because I didn't want anyone, including him, to leave me out of a service opportunity or calling because I'm sick. He made me promise I would tell him if I ever became overburdened and with that understanding between us, I was able to stretch and grow for over 2 years as Young Women President. That calling became one of my greatest blessings and the perfect distraction from the harder parts of life.
On the other hand, please...
3) Do believe us when we have to sit one out. My diagnosis took 10 years to obtain, after a series of specialist appointments where I was either told, "Nothing is wrong," or even worse, "It's all in your head." This is a common occurrence for those with chronic or invisible illnesses and many of us have spent our lives trying to convince not only doctors, but friends, family, and co-workers that we really are sick! Now, I totally get that it's hard to understand something you can't physically see or feel. But we have to feel it every day and to have our integrity questioned is invalidating and disheartening.
After speaking with fellow friends with illness, it seems disbelief is often displayed in one of two ways. The first starts with a line such as, "Well, how come she can go shopping on Monday if she's 'too sick' to teach primary on Sunday?" The answer is, who knows? Maybe Sunday she had a sudden flare-up of symptoms. Maybe her friends had to physically pull her out of bed to get her to the mall and it was her one sanity-saving grace for the week. The point is, only she really knows and it's no one else's business. Tell her it's so great to see her and maybe that you're happy to sub her primary class the next time she's feeling under-the-weather. You will both feel so much better than if you had placed judgment on her situation.
The other form of disbelief is more direct and sounds something like, "He's always sick with something. He says he didn't get his home-teaching done because he has 'anxiety.' Sounds like an excuse to me." With few exceptions, most of us chronically ill hate being, "always sick," dislike the limitations of our symptoms and are deeply paranoid about having our intentions questioned. Showing empathy is such a great alternative to making assumptions.
I completely understand that sometimes a situation doesn't add up or make sense to us. But, I would rather believe someone and hope they are telling the truth than distrust them and risk being wrong about it. There may be specific circumstances where truth isn't told and an honest assessment is necessary but for the most part with most people, just choose to believe us.
Chronic and invisible illness can equip its members with some serious coping skills and we can understand that most people mean well. But we can still learn to reach out and understand each other a little better. That goes for all of us, sick or healthy. So let's share our experiences, learn from them, seek out understanding, forgive and forgive again, and of course, attempt our own bests at modeling our Savior's example of love and compassion. After all, that's the path we have chosen to walk together as disciples and members of The Church of Jesus Christ of Latter-Day Saints. And for that, regardless of having many physical challenges, I am eternally grateful.