How to talk about embarrassing MS symptoms

Multiple sclerosis (MS) can be categorized in different ways. It’s a neurological condition that causes damage to the central nervous system (the brain and spinal cord).

It’s also an autoimmune (or immune-mediated) disease that causes unwanted inflammation that damages nerve tissues (more specifically, myelin, a layer of fats and proteins that covers and protects nerves).

It’s a condition that can follow different patterns and cause a wide variety of symptoms.

While there is no cure for MS, there are medicines that can help reduce disease activity and treatments that can address MS relapses. Treatment also focuses on addressing any symptoms that are caused by MS.

If you are living with MS, it is important to talk to your healthcare provider about the symptoms you are experiencing. This is sometimes easier said than done, as some MS symptoms can be embarrassing or uncomfortable to discuss.

When MS symptoms become embarrassing

MS is a different experience for everyone, and we all have different comfort levels when it comes to talking to a healthcare provider, and what needs to be discussed with a healthcare provider.

In other words, people experience different levels of embarrassment and feel embarrassed over different things.

Problems controlling the bowels and bladder can occur as a result of MS—and if you experience these symptoms, know you are not alone. MS can also cause difficulties with sex and intimacy. For many people, talking about these topics—even with a healthcare provider—can be difficult.

But other symptoms can be embarrassing as well. Problems with balance, cognitive changes, and difficulties with speech are a few examples.

Talking with your healthcare provider

The idea of talking with your healthcare provider about these concerns might feel awkward or overwhelming. To help make the conversation a little easier, here are some strategies that you can use during your appointment.

• Keep your goal in mind. Your goal is to find a way to address a symptom—whatever that symptom may be. Your healthcare provider is there to help you accomplish this goal. When you’re honest, upfront, and open with your healthcare provider, they can more clearly understand what you are experiencing and provide you with better care.
• Remember, your healthcare provider has heard this before. MS is typically treated by a neurologist, who will have treated many patients with many neurological conditions who have experienced many symptoms. Odds are that any symptom or concern you have will be something they have helped treat before.
• Bring a conversation starter. Starting the conversation can be the most difficult part. Before your appointment, write down the first sentence of what you want to talk about.
• Tell your healthcare provider you’re embarrassed. You may want to begin by stating that you feel embarrassed about some of the things you want to talk about. This can help break the ice. Your healthcare provider may even have their own strategies for putting you at ease.

Another strategy that can help—connect with other people who have MS. This may be in the form of a support group or an online discussion group. The only people who truly understand what it’s like to live with MS are other people who have MS.

Talking to other people who have MS can help you get more comfortable talking about your experience. Other people with MS may have their own strategies for discussing uncomfortable topics with a healthcare provider.

If you ever feel like a healthcare provider isn’t taking your concerns seriously or is being judgmental, consider looking for a different healthcare provider. Treating MS is an ongoing, changing process. Feeling comfortable and heard is essential to getting the care you need.