Symptom Management

Dealing with Doubters: The Secret Side Effect of  Unpredictable and Invisible Symptoms

The unpredictable nature of relapsing MS can make life especially difficult. Balancing home-life, work, parenting, and self-care is tough on its own, but when your symptoms come and go, it’s hard to know what level of responsibility you’ll be able to handle from day to day. It’s also tough to plan for social occasions, travel, household projects, or career advancement when the fear of a symptom flare-up constantly looms over you. As challenging as this uncertainty is to manage, it can be even more difficult to explain your concerns to those who have never lived through it. As a result, it’s not uncommon for people with unpredictable symptoms to be met with doubt by people who don’t fully understand the nature of their condition.
The problem is compounded when your symptoms are both unpredictable and invisible. Invisible symptoms are sometimes treated with not only doubt, but outright disbelief. For example, you may have heard stories of people with invisible symptoms who have had cruel things said to them for using disabled parking spaces. But when a person has both invisible and unpredictable symptoms, it is not only uninformed strangers that may doubt them, but sometimes even those closest to them.
When family and friends can’t see a pattern to your symptoms, and can’t see for themselves when you are experiencing them, they can develop mistaken ideas, wondering why you can’t do something today that you could easily do yesterday. They may question whether you are exaggerating your symptoms, or even faking them to garner sympathy or avoid doing something you don’t wish to do. Obviously, such distrust and doubt from the people you love can deeply hurt you and seriously strain your relationship. So, how can you prevent it, or repair relationships that doubt has already damaged?

Preventing Doubt from Taking Root
Whether you are newly diagnosed with MS, or have recently experienced a new invisible symptom, now is the time to establish open communication and begin educating your loved ones about your experiences.
Ask family and friends to learn about the condition with you. Keep in mind that different people learn in different ways. For some, reading an article about MS, or a particular symptom, may not be interesting or an effective way to learn. Don’t worry, there are many other options. In addition to reading material, MS Focus offers videos and online radio programs, as well as support group meetings and live educational programs around the country that family and friends are welcome to attend. Look for the source of information that fits the way each person learns best.
Communicate about your daily experience. Many people refrain from talking about their health problems until it interferes with their daily activities. This is often out of fear that people will perceive them as “complainers.” However, it’s entirely possible to share your health issues with your loved ones without “complaining,” particularly if you discuss it during the times you’re feeling reasonably well. For example, you might say, “I’m glad I have energy this morning. It’ll be good to get things done early in case I get fatigued later. When MS fatigue hits, it is so debilitating that I can’t really do the things I want to.” Discussing what you are experiencing will help your family and friends understand your symptoms before any doubt can arise.
Strategies to Fight Doubt
If those close to you have already begun to express doubt, it’s not too late to educate and communicate. There are additional strategies you can use.
Manage your reaction. Certainly, it hurts to have loved ones distrust or discount your personal experience. Rightfully, you may feel insulted or betrayed, but an angry or defensive reaction will only increase the tension. A calm, matter-of-fact response will be most effective at removing doubt.
It may help to consider things from their point of view. There may be no outward indication of what you are experiencing – hey only have your word that it exists. They may be frustrated with having to take on additional responsibilities, or disappointed that you had to cancel planned activities. Lack of a good understanding of MS makes it easy for doubt to creep in, especially in an emotionally charged situation. Two strategies that help are acknowledging the effects that your condition has had on your loved ones, and keeping your cool as you explain the facts.
Let them “see” the invisible. Many misconceptions stem from the idea that a person is “fine” one day and ill the next. In reality, most people with MS are rarely “fine” on any given day. For example, just because your fatigue is not bad enough to prevent you from doing things, does not mean you aren’t experiencing fatigue that day. But if you only communicate about your symptoms on the bad days, people mistakenly assume you are not experiencing symptoms the rest of the time.
Try to be more open about your symptoms, and put them in terms your loved ones can understand. On a better day, you might say, “My pain is a 3 out of 10 today. I’m doing pretty well.” Then on a bad day, if you say, “My pain is a 9 right now,” your loved ones will have some context to understand how pain is affecting you.
You might even choose to keep a chart of your symptoms, so your loved ones can see what you experience daily. This will serve as a reminder that your symptoms are present, and perhaps even help you – and them – identify patterns or triggers that worsen your condition.
Seek outside help. Sometimes, doubt may actually be a sign of denial on the part of your loved ones. It can be easier to allow yourself to think a loved one is exaggerating their symptoms than to let in the fear that the person’s health is getting worse. If your efforts to fight your loved one’s doubt don’t succeed, counseling may help repair your relationship.

While a loved one’s doubts may sting, keep in mind that it means the person wants to believe you are healthy. While that may not be the case, with effort, a healthy relationship for you and your loved one can usually be achieved.