If you have an invisible disability or illness, mental, physical, or both, you know that talking about it isn’t always easy. Sometimes it’s difficult to explain to others exactly what you’re experiencing. Other times it seems easier to not talk about it at all. And some of the time, we’re afraid that we’ll be met with doubt or negativity. However, it’s better to be open and honest with others about what you’re experiencing. Not only will it help others to better understand what you’re going through, it’ll help spread awareness to invisible illnesses and you’ll be surprised by how much support you may receive!
It took me years to navigate how to talk about my own invisible illnesses. I can say for sure that talking about it has been very liberating. I’ve definitely dealt with negativity, but I’ve been overwhelmed by how much positive support I received over the years.
Whether someone asks you about your illness or you choose to talk to someone about it, communicating about your invisible illness can be a very positive experience. I wanted to write this blog during the holiday season because it’s important to talk to your friends and family about what you can and can’t do. I believe it’s important to not push yourself to please others and to make sure to take care of yourself during this time of the year. So in this blog, I’ll be talking about how to discuss an invisible illness with others.
Be As Open As You Want to be About Your Health
I want to talk about this first. If you’re not comfortable talking about your invisible illness, then do whatever makes you comfortable. I do recommend at least talking about it with close family members or friends that way you have support. However, invisible illnesses can be extremely difficult to talk about because they’re so personal. So it’s understandable if you don’t want to tell someone every detail about what you’re experiencing.
I have found that most people have been quite respectful when I don’t want to talk about my invisible illnesses. There are some days where I just don’t want to get into it. I let them know that I appreciate their concern but I’m really not up for talking about it. Most of the time they completely understand and let it go.
If you do want to talk about your invisible illness, but you don’t want to go into every little detail, that’s okay too. Divulge as much of your story as you want to.
Bring Literature About Your Invisible Illness
I found that bringing some form of literature that discusses the invisible illness I have can help. However, I’m not always carrying around pamphlets with the invisible illnesses I have just in case it comes up in conversation. I don’t care to be THAT prepared. So I usually direct people to a website that discusses what invisible illness I have. This allows that person to look into my illness on their own time and it’s great whenever I don’t want to talk about it too much.
One invisible illness I have is MdDS (Mal de Débarquement Syndrome), a very debilitating and life-altering invisible illness. So many factors affect my symptoms from driving to the weather to my menstrual cycle. It can be exhausting talking about it simply because there are so many factors. This is why I point people to the MdDS foundation website. Here, they can learn about what I’m going through, read other people’s stories who also suffer from it, and look at academic literature and studies that have been done over this invisible illness.
When I first told people to go to this website, I was surprised by how many actually went and read about it. To be honest, I wasn’t expecting so many people in my life to be that interested and search about my illness on their own time. I was extremely touched and it let me know just how much support I have in my life.
Talk to Others About Your Limitations
I find this to be the toughest challenge to tackle. However, talking about your limitations can be an important thing to discuss with your family and friends. If you have an invisible illness that prevents you from doing certain things, it’s a good thing to let your friends or family know what you are and are not able to do.
One major limitation I have is with diet. For those of you out there who have to eat a specific diet, you probably know what I’m talking about! One of the toughest things to talk about is dietary restrictions, but it’s so important.
One way that I tend to push myself is by eating things I shouldn’t eat because I don’t want to hurt another person’s feelings. So many people bring dishes during the holidays and want everyone to try them. Because I don’t want to hurt their feelings, I’ll eat food I really shouldn’t. This causes me to be sick almost every holiday season. I started cracking down on myself the last year or two and told people my dietary restrictions. Surprisingly, I heard more resistance when it comes to food than any other invisible illness I talk about. You wouldn’t believe how many people have said “Well surely a little bit wouldn’t hurt.” I have to stand up and say no, which has been extremely tough, but really rewarding in the end. Hooray for not feeling sick!
I recommend talking to family and friends beforehand about your dietary restrictions. One of the things I like to do is bring my own food to share with others when getting together. That way I’m guaranteed to have food that I can eat. However, sometimes people want to cook for you and if that’s the case, let them know about your dietary restrictions. You’ll find that most of the time they’re more than happy to accommodate them! And if they’re not, then bring your own food anyway. There’s no reason you shouldn’t be able to eat what you need to.
Find A Support Group for Your Invisible Illness
Finding a support group is so important when you have an invisible illness. With my MdDS support group online, I have discovered new ways to talk to people about MdDS and new things that may alleviate symptoms. I’m constantly learning from them. On top of that, I receive so much support whenever I post something in the group forum. I recommend that anyone who has any illness find a support group. You’ll be surprised by how many resources you find, stories you hear, and help that you receive.
Negative Responses About An Invisible Illness
Sometimes we have to deal with a negative response when we talk to someone about an invisible illness. Here are a few of the things we may have heard
- It’s all in your head.
- Can’t you just push past it?
- That doesn’t sound real.
- It sounds like an excuse.
- It can’t be that bad.
I could go on and on, but I’m going to stop there. Being met with these kinds of responses is exactly why so many with invisible illnesses don’t want to talk about it. It’s difficult enough to deal with whatever symptoms your invisible illness throws at you. Dealing with these negative responses is extremely disheartening and quite draining.
If you’re met with one of these responses, you have a few options as to what you can do. If you would really like the other person to understand, try to be patient with them. They don’t understand what you’re going through and they are most likely just processing it. This would be a good time to show them a website or any literature you have on your invisible illness. It’s extremely difficult to argue over studies and academic literature. Although, unfortunately, I have seen people do it.
If the person is completely resistant to understanding what you’re going through, they may not be worth having in your life. We all deserve to be surrounded by people who love us and support us. If a person is unable to get past their own opinions about what you have, they may not be serving such a positive purpose in your life.
Sometimes, we don’t have a choice and the person who doesn’t believe us may be a family member, roommate, or someone really close that we can’t or don’t want to cut out of our lives. This is one of the most difficult situations. However, their opinions do not change the illness you have. Regardless of what they think or believe, keep taking care of yourself as best as you can. Make sure to find supportive people so that all the support and love from them will drown out any negative comments you hear. It’s sad when someone chooses not to understand you, but that’s all the more reason to be grateful for those in your life that do.
I am so grateful for all the support and love that I’m shown when I open up and speak honestly about my experience with invisible illnesses. I heard negative responses and, while it is unpleasant, they don’t bother me so much anymore. As long as I have supportive people in my life, I’m able to ignore the minor negative responses I receive. Talking about an invisible illness can be very rewarding. When you talk about your invisible illness, how do you approach it? Do you have any recommendations for those who are wanting to talk about their invisible illness?