How to Talk to People About MS
Remember when you received your diagnosis of multiple sclerosis (MS)? It was a confusing time for many of us, filled with questions about what it meant for our future and the changes we would need to make. But if MS is perplexing even for those who have it, imagine how difficult it is for our family members, friends, co-workers, and employers who have no experience or knowledge about it. So how do we effectively communicate with them and convey what MS means to us?
When I first learned about my own MS, the first people I needed to inform were my children, who were 10 and 8 years old at the time. As a nurse, I had read about MS, but I had to carefully consider what I wanted them to know. I followed the principle of sharing only what they need to know. Therefore, I told them that not much would change, although I might have to do things more slowly and rest more often. But I assured them that I would still be their dad. Our loved ones typically have a few common concerns: how MS will impact our relationship, the things we might no longer be able to do for them, and how they can support us.
Honesty is crucial when communicating with family members. We must avoid pretending that we can do more than we actually can. By sharing our true feelings, they can better plan their own lives accordingly. It's important to note that communicating about MS with family is not a one-time event. We need to be able to share how we're doing on any given day, discussing our fatigue level and emotional state. Many families affected by MS find that the condition has actually brought them closer together, fostering a greater level of honesty.
When it comes to acquaintances and casual friends, we usually don't need to be as open as we are with family. Some individuals may genuinely be concerned and willing to help, while others might simply be nosy and looking for drama. However, if they can perceive that something is wrong with us, we are often compelled to share some information. Educating ourselves on MS enables us to explain it more effectively if we choose to do so. Reading books or consulting trustworthy websites can be helpful in this regard.
For me, when answering sincere MS-related questions, I have found that using concise statements is effective. For instance, I describe MS as a disease of the nerves and explain that it affects each person differently. I briefly mention my own symptoms if I feel comfortable sharing. If asked whether our friendship can remain the same, I emphasize that I have good and bad days. I request understanding if I cannot participate in activities on certain days but assure them that I will be available on other occasions. When it comes to the prognosis and what will happen, I admit that I don't know as each person's experience with MS differs. However, I express my determination to keep moving forward.
The question What can I do to help? requires careful consideration. Often, people genuinely want to support us and are capable of doing so if we give them specific requests. However, sometimes all we need is their friendship and presence. If they bring up topics we feel uncomfortable discussing, it is acceptable to redirect the conversation by stating that we prefer not to discuss it at that moment and have professionals to consult instead.
In the context of work, disclosing our MS diagnosis can have both positive and negative repercussions for job security and our careers. It is important to understand our rights under the Americans with Disabilities Act (ADA) before sharing this personal information with our employers. Personally, as an advice nurse with a seated job, MS did not hinder my ability to perform my duties. However, visible signs of my condition, such as using a cane or taking short naps during breaks, made it evident to my colleagues and supervisors that something was different about me. After establishing myself as a reliable worker, I felt more comfortable disclosing my MS to my co-workers. If I had required work accommodations like shorter shifts or specialized equipment, revealing my MS earlier would have been necessary, even with the risk of potential dismissal. This is especially relevant for individuals employed by small companies not covered by the ADA.
Additional strategies for explaining MS include having a solid understanding of the condition and being able to explain the science behind it. If we lack confidence in our knowledge, we can provide printed materials from our neurologist or the MS Society, along with trusted website links. Close family members might benefit from accompanying us to a doctor's appointment. Furthermore, inviting anyone to an MS support group can offer valuable insight and demonstrate that our condition is genuine and not a result of peculiar behavior. It is important for people to understand that every case of MS is different, the condition is not fatal or contagious, and its impact can vary over time. They may also notice emotional changes and can play a role in identifying any alterations they perceive. The unpredictability of others' reactions to our MS disclosure should be acknowledged; they may be shocked, disbelieving, or have emotional breakdowns. It is possible that we might end up comforting them instead. Nevertheless, the benefits of mastering communication about MS far outweigh the challenges. It is just another obstacle we can overcome to lead fulfilling lives while managing our chronic illness.
For guidance on discussing MS with employers and family and friends, the MS Society provides helpful information. To connect with others facing MS, consider joining our MS Facebook Support Group.