There are multiple challenges that confront someone who has MS. One that is present from the very beginning is the question of whether, how, and who to tell that you have MS. There isn’t a simple answer to this question. How people deal with the issue of disclosure is shaped by many personal and circumstantial factors, such as the visibility of their symptoms, where they are in the disease course, the issues they are facing, and who and what they are considering telling. This issue of InforMS explores the topic of disclosure generally and from the points of view of a person who has MS and an attorney who specializes in employment law.
Multiple sclerosis is not a noun; it’s a verb. It isn’t a single event; it is a journey that lasts from diagnosis to death and it includes both physical and emotional challenges. It is a difficult disease to talk about because it is so complex and because the problems it causes are so variable and change over time. How and whether someone talks about it, then, is influenced by where they are in the disease course. Although the details are different for each person, the MS journey can be roughly divided into different stages—pre-diagnosis and diagnosis, dealing with the diagnosis, and living with the disease—that each pose different problems.
THE JOURNEY BEGINS
Occasionally people are diagnosed with MS “by accident” because they have an MRI for some unrelated reason and, even though they have no symptoms, the MRI results indicate MS. For most people, however, the journey begins with a string of weird or disturbing symptoms that may come and go. Some people have a family history or some other reason to suspect MS but for most, the symptoms are perplexing and people talk themselves in and out of being worried, until they finally reach an anxiety threshold and call the doctor. When that appointment arrives and the doctor, instead of dismissing their concerns, says “I think you need a referral to a neurologist,” they embark on the next leg of the journey.
For some people, the actual diagnostic process is quick and straight-forward. For others it is drawn-out, involves multiple tests, and is very intrusive. For most people it is somewhere in between. Whatever the process, it is almost always distressing and highly emotional. Some people are devastated when they receive the diagnosis because they thought they just had a pinched nerve and didn’t see MS coming. Others are relieved because they were anticipating something much worse or because they finally have an answer to what has been bugging them for years. But whether they are devastated or relieved or somewhere in between, it isn’t long before they realize that, although the diagnosis answers one big question—“What’s wrong with me?”—it immediately creates an even bigger question—“What does this mean for me and my life?” You receive the diagnosis in four words—“You have multiple sclerosis”—but there is a big gap between hearing those words and understanding what they mean.
ABSORBING THE DIAGNOSIS
The process of bridging that gap launches the next leg of the journey: dealing with the diagnosis. It is often very difficult to make sense of the diagnosis; just because we know what something is does not mean that we understand what to do with it. Remember the last time there was a power outage at your home. Who among us has not walked into the kitchen and flipped on the light switch, tried to use the microwave or turn on the TV, only to have the lack of response remind us, again and again, that the power is out? Although we know the “facts”, we have not integrated them into our thinking and behavior. And so it is with MS.
People have a lot of questions. When will my symptoms go away? Will my symptoms go away? What if they don’t? What does this mean for my future? Will this change things at work? Why is this happening to me? The diagnosis raises many questions that do not have immediate answers, or maybe any answers at all. Finding answers is also hampered by the very irritating reality of MS—that it will be a different disease for each person who has it—so the answers that work for some may not work for you.
The literature on disclosing MS to others makes a distinction between concealing, informing, disclosing, and partially disclosing a medical condition.
Trying to talk with other people about your MS during this time can be difficult and confusing. Answering a simple question like, “How are you doing?” can be a challenge. People are often diagnosed during an exacerbation but these tend to remit, symptoms improve, and there is an appearance that things are back to normal. Although the symptoms may be gone, the diagnosis and the disease linger like a bad dream, but how do you understand that yourself? Or even begin to explain it to someone unfamiliar with MS?
A hallmark feature of MS is its variable disease course, so another reason it’s hard to talk about MS is that most people don’t actually know what to talk about. If you are newly diagnosed, you may have done tons of research and have lots of information, or you may have imposed an MS blackout and have no information whatsoever—but in either case you do not know how MS is going to affect you. It takes time to figure that out. How MS impacts your life will be influenced by the disease course, the extent to which symptoms remit, the support and care you receive, your history and coping style, your present circumstances, and a long list of other factors.
When people are struggling to get their head around the diagnosis, it is quite common for them to experience a wide range of emotional responses—from flat denial that MS will be a problem, to daily melt-downs, and every place in between. Eventually things calm down and people come to some sort of terms with MS but that does not usually happen easily or quickly, and in the midst of the struggle, it can be really hard to know how to think about it, or what to say about it to anyone else.
LIVING WITH MS
Although many people say, when they are diagnosed, “I’m not going to let MS change my life,” most people find that in big or small ways it does change things. Learning to live with MS is about settling into the realities of those changes. Some of the uncertainty that accompanies living with MS has been lightened because disease modifying therapies do help slow disease progression and reduce the frequency of exacerbations. But people still have to deal with persistent symptoms and uncertainty, disease progression, good and bad days, and all the other irritating factors that accompany a chronic illness.
Learning to live with MS is also about figuring out how to be with your MS in the world and whether and how to talk about it with other people. When MS causes visible symptoms, for example a mobility impairment, that there is something going on with you is evident; the question becomes how and to what extent you chose to explain what that is. But many MS symptoms, such as fatigue, vision problems, and numbness, are invisible, and this creates the option of keeping MS a secret.
TO SPEAK OR NOT TO SPEAK—THAT IS THE QUESTION.
The literature on disclosing MS to others makes a distinction between concealing, informing, disclosing, and partially disclosing a medical condition. To inform means simply to state that you have MS. Disclosure means that you are also providing information about how MS affects you. Partial disclosure involves providing selective information about how MS affects you. When you conceal MS, you are making conscious efforts to hide symptoms. To illustrate the difference: if you are using a cane and someone asks you why, and you respond, “I have MS,” you have informed them. If you further say, “I’ve had it for 10 years and it affects my balance, so I use a cane most of the time,” you have disclosed some personal information about your MS. On the other hand, if you respond, “I have this medical problem that sometimes affects my legs, so I’m using a cane today because I’m tired,” you have partially disclosed your condition. If, however, you don’t want anyone to know about your any of this, you might simply stay home and avoid the public eye, or you might stay seated at a social gathering, or you might use someone’s arm instead of a cane for support, in order to conceal your MS.
Depending on circumstances, any of the above options might be the right choice for you. There is no right or wrong answer about whether and how to talk about MS. Making the choice not to disclose doesn’t necessarily mean you are in denial any more than choosing to tell people means that you are seeking special attention or making excuses for yourself. Whether to tell others about MS depends on many, many factors. One of the big ones are who do you want to tell and why and what do you want to tell them? Another is where you are in the process of coming to terms with your MS—are you still pretty fragile or are you in a more solid place?
There are downsides to disclosure. Bear in mind that MS is a rare disease, most people probably know less about it than you do, and even when they have some knowledge they may overgeneralize what they know. Sometimes people are insensitive and may respond to your disclosure in a way that feels belittling, patronizing, indifferent, overwhelming or downright hurtful. If you are in a fragile place and don’t have your hands around how you think about MS, fending off the impact of such comments can be difficult. Everyone with MS has experienced someone saying something thoughtless, for example (this actually happened) “How long do they give you?” Or, countering your complaint of fatigue with a story about a friend with MS who recently climbed Mt. Everest (also a true story.) Depending on where you are in the journey, such interactions can be devastating, merely irritating, or mildly funny.
It can be useful, when disclosing MS, to ask that person if they have dealt with other people who have MS, and if so, how MS affected them, rather than merely asking if they know what MS is. Lots of people think they know what MS is because they know one person who has, but since the disease is highly variable, this gives you an opportunity to talk about how MS affect you.
Know why you are talking about your MS. Are you talking to an employer because you need accommodations? Are you talking to a friend because you want support? Are you talking with someone in your book club because you may need to cancel plans at the last minute? Do you just want someone to listen and empathize? Do you want help problem-solving? If you can be clear about this with the person who is listening, you often get a better response.
Sometimes people think their symptoms are more invisible than they really are, especially in the case of gradually worsening symptoms.
There are also reasons to conceal MS. There are some environments and circumstances where it just does not feel safe to disclose MS. Sometimes the timing is bad and it may be necessary to wait a bit. Some people are very private and simply do not want to disclose personal information. Whatever the reasons, you never have to tell anyone you have MS, and some people never do. Concealment can be successful when symptoms are minimal or invisible or can be accounted for in another way. However, this strategy can be risky, particularly in the workplace. Sometimes people think their symptoms are more invisible than they really are, especially in the case of gradually worsening symptoms. When the people around you don’t know you have MS, they may account for your increasingly off-balanced gait by assuming, for example, that you are developing a substance abuse problem. When in doubt about whether your symptoms really are invisible, ask a friend for some honest feedback.
There are special circumstances, like job interviews, where disclosure issues become more complicated. If you have a visible disability, it may be a good idea to have a disclosure plan prepared to explain it. Generally, a potential employer cannot ask you if you have a disability, but they can ask if you might need an accommodation to manage the job responsibilities. A straight forward disclosure that provides relevant information about MS but stays away from details will give you an opportunity proactively address potential concerns, focus on your ability to do the job, and manage the issue in a way that highlights your abilities and poise. Even when a disability is not visible some people make the choice to disclose their MS, if not in the job interview, shortly after being hired. However you disclose, having a thought-out disclosure plan is helpful.
Some research indicates that people who are open about their MS is one setting are likely to be open about it in others and that people who are comfortable disclosing in personal relationships are more likely to disclose at work. That said, just because you disclose does not necessarily mean that people will understand, be considerate, or even remember that you have MS. This is especially true when symptoms are less visible. You will likely have to remind people, again and again, that you have MS and can’t take the stairs, or sit in the sun, or shop for two hours, because people forget.
Finally, how you feel about your MS and whether or not you want to talk about it will likely change over time as you and your MS change. The bad news about MS is that it is a chronic disease and it won’t go away. The good news about MS is that it is a chronic disease and you will still have it next year, so you have time to figure out how you want to manage it and how you want to educate and include others in the process.