Before being diagnosed with extreme food sensitivities, multiple chemical sensitivity and chronic fatigue syndrome last year, I knew very little about these types of mysterious chronic illnesses. I’m still far from being an expert on the subject.
But one thing I’ve realised through opening up about my experience is that unfortunately more people than I would ever have imagined suffer from similar illnesses, often in silence. Many friends have reached out to tell me about their own or loved ones’ difficult experiences with conditions similar to mine or other related ones, such as fibromyalgia and anxiety.
Knowing how challenging living with such a condition can be, I compiled this list of 7 ways that you can support someone suffering from a mysterious chronic illness.
1. Believe them.
The first and most important thing you can do is to believe them, no matter how surreal their story or symptoms sound. As my illness progressed, I remember thinking that had this happened to someone else rather than to me, I would have found it hard to believe it was possible. How could someone be unable to tolerate all but 8 foods and become housebound because of debilitating reactions to chemicals in everyday items like laundry powder and soap? And yet it was happening to me. And to make it seem even less believable there were no tests to affirm what was happening. Only my own very scary experiences.
I have spoken to and read about many people whose partners, family, friends or colleagues didn’t believe them or just labelled them as crazy and I can’t even begin to imagine how hard that must make an already difficult situation. In fact I really believe that the fear of not being believed or of being judged is why so many people choose to suffer in silence. But I have been blessed with the most supportive husband, family, friends and colleagues and that made things so much easier.
2. Show your support when you can.
I was touched by all the messages of support I received throughout, not only from close family and friends, but also from people who I didn’t know too well. Sometimes just a short message to tell the sufferer that you’re thinking of them and/or praying for them could make their day. But I feel it’s important to keep in mind that at times they might be too tired or overwhelmed to even answer.
3. Listen but try not to ask too many questions.
When speaking to a sufferer, my advice would be not to ask too many questions but just to see how much the person wants to speak about what they’re going through. Chances are they’re overwhelmed and tired of repeating the same thing, but they might also want to be able to speak to you about what’s happening. Being surrounded by people who were always happy to listen to me go on and on about what was happening without ever pushing me into it made things a whole lot easier.
4. Don’t worry about saying the wrong thing.
Before this happened to me, I always used to worry about saying the wrong thing in difficult situations like these. But what I’ve come to realise is that there isn’t necessarily any right thing to say. But just by showing sufferers that you’re there for them, you are definitely doing the right thing, even if it seems as though the words aren’t coming out quite right.
I recently came across this quote, which I feel sums it up perfectly: “The best thing to do is to sit in the mess with the person for a while without feeling the need to fix it." - Michele Cushatt
5. Offer practical support when possible.
One thing I always really appreciated was when people used to offer practical support, like going shopping for me. In my case, my mother used to drop everything every day just to be able to help me, so I didn’t ever need any more external support. But just knowing that people were happy to help at such a practical level made a huge difference.
When I was housebound, I also really appreciated it when people offered to visit. But there were times when I was just too weak to even think about having people over. So I would suggest that you offer it but understand that it might not be possible or that the sufferer might need to cancel at the last minute in case it happens to be a bad day. In the case of multiple chemical sensitivity you might also have to go to extremes to be able to visit the person. I will always be grateful to those who went the extra mile to be able to meet me.
6. Suggest solutions without putting any pressure.
Most of us have an innate tendency to want to help someone who is suffering. But the likelihood is that people suffering from a mysterious illness have tried hard to be given an explanation about what is happening and what they can do about it. And chances are they have not been given many answers and have started to lose or have lost hope of ever being able to recover fully and live a normal life. They have instead learned to adapt to their condition to the best of their ability, because it is difficult to keep hoping, trying new things and being disappointed.
So if you know of or come across any potential solutions, of course it is always helpful to suggest them, but do keep in mind that sufferers might not be ready or willing to try them. I feel lucky that I reached a point where I decided to give neural retraining a try, but it would not have worked if someone had tried to pressure me into it.
7. Don’t treat them any differently than you used to.
Keep in mind that though a sufferer is ill, he or she is still the same person as before. Don’t treat them differently as it makes things harder for them. Sufferers of mysterious chronic illnesses wish to be able to lead normal lives or lives as close as possible to normal.
Question: Do you have other suggestions of ways to support someone suffering from a mysterious chronic illness? If so, please leave a comment below.
PS – Should you wish, you can read more about my health journey here. If you want to know more, you can subscribe to receive updates via email at the top of this page. You can also contact me via e-mail or follow me on Facebook.