Relationships Part 2: Effectively Communicating Your Illness

This article first appeared in The Fibromyalgia Magazine in August 2016.

In last month’s issue, I addressed the ‘what-ifs’ that accompany fibromyalgia when dealing with relationships. If you have made the decision to tell others about your illness you may feel confused as to what to say or how to say it. You may not know how to tell the other person how they can help you, and be supportive in a way that is not pitiful, guilt-ridden, less than, or upsetting. Here’s how to tell others, how much to tell others, and how others can help when it comes to communicating your illness.

How to Tell Others

Don’t overthink this. Don’t overanalyze each encounter with another person and have a constant hesitation of mentioning fibromyalgia hanging in the back of your mind. Wait for the opportunity to arise or casually bring it up when an appropriate subject is discussed. In other words,

Be patient and the moment will find you.

Communicating Your Illness

When the opportunity arises to tell another person about your having fibromyalgia, be careful how much you tell them. You don’t want to overwhelm them with too much information or confusing medical jargon. Fibromyalgia is a mysterious and complex illness that baffles fibromyalgia sufferers and physicians. Trying to explain to those not connected in any way to the illness can leave both parties in the dark of communication. Give a brief straight-to-the-point summary of the illness avoiding uncommon terms.

For example, say,

“I have fibromyalgia or fibro for short. It affects my entire body in some kind of way but in particular my nerves and muscles. In addition to overall unexplained body aches, it also causes chronic fatigue and digestive issues. It’s like having the flu or over-exercising every day. It doesn’t have a cure, and will never go away despite treatments. Some days are better than others, but having others to support and understand me helps with healing.”

While talking to the other person use positive body language such as making eye contact, not crossing your arms in a defensive manner, and smiling in a genuine way. Often times people have a tendency to speak fast when nervous, so make sure to breathe deep and speak slowly in order for the other person to fully receive your message.

How Others Can Help

After you have given your summary in communicating your illness, the other person will most likely follow it up with a question or comment. If they don’t, break the ice and ask if they have heard about it or know someone with it. This will spark a further conversation about it.

In the follow-up discussion, mention the ways that are helpful to your healing while avoiding any requests that sound demanding or inconveniencing the other person. These ways will vary from person to person as well as the person to whom you are speaking.

In my case, having help with the kids or having nights out with a friend is important to my well-being. Swapping playdates or babysitting duties with another couple for date night is a great way for me to get that time away from the kids. Find out what works for you and convey that to the other person.

In summary

• avoid big, confusing medical words,
• give a brief summary of the illness,
• use positive body language such as smiling, not crossing your arms, speaking slowly, and making eye contact
• Take a deep breath and articulate your message
• keep the conversation short, to the point, and simple,
• tell them how they can help without making them feel obligated or you feeling guilty, and
• ask if they have any questions or concerns about your illness.

Be sure to explain that there will be days you will not feel well enough to do planned activities, but that does not mean you don’t want to do those activities. Rather, you are not physically able to do them at that particular time. Suggest an alternative plan such as coming over for tea or a movie. If you don’t feel like visitors, offer a make-up day of some sort.

Overview

Living with fibromyalgia can be a private matter, and telling others about your condition can make you feel vulnerable; however, communicating your illness and its unpredictability of it will most likely grow, and strengthen your relationship.

Telling others about fibromyalgia is essential in building a trusting, effective support system, and spreading awareness and understanding of the illness. This results in faster healing – physically, emotionally, and mentally. The more people that are surrounding you with love, care, understanding, and support, the better your journey will be to healing.