The invisible disease. The silent struggle. Unlike other diseases, Multiple Sclerosis can largely present only internally, mainly as pain and fatigue. This, in turn, creates an entirely new kind of pain—the pain of being alone in suffering. When others don’t know what is wrong, or can’t fully understand what it is like to live with MS day in and day out, most living with the diagnosis often forgo speaking up, and instead, learn to cope quietly.
In a recent article posted on MultipleSclerosis.net, author Kim Dolce describes her first appointment with her neurologist upon receiving her MS diagnosis. The doctor began questioning her history of childhood illnesses—and this caused the floodgates to open. She realized she had been living with MS for decades. Suddenly, the pains she suffered in her legs at age 8, and the loss of balance that caused a bike crash at age 12 made sense.
Looking back, she could see that these previously inexplicable problems were no longer inexplicable. This disease had been part of her life all along.
Learning this doesn’t necessarily change her treatment plan, but it does bring Dolce some clarity along with some peace. Her past makes sense.
We recently posted her article on the MultipleSclerosis.net Facebook page, and asked if you related to her experience. More than 100 of you reacted to the post, and many of you commented.
Here’s what you had to say.
“I can remember the aching legs from age 8.”
For many of you, Dolce’s article brought clarity to your own pasts, making sense of events and experiences that otherwise went unexplained. Because you didn’t receive the diagnosis until much later in life, you went through childhood and early adulthood with pains and aches that didn’t fit with what the doctors said. At the time, the pain brought confusion and frustration.
“I was diagnosed at 59, but when reading the above article, I can remember the aching legs from age 8 or so every night, sobbing my heart out and the doctor telling my mother that it was growing pains. That could very well have been the first sign that I was a candidate for MS!”
“I fell often before doctors knew what the problem was.”
“I’ve had undiagnosed symptoms for 40+ years.”
Unfortunately, this scenario seems all too common: That many of you lived with symptoms for decades. As challenging as the physical symptoms were and are, the problem was exacerbated by the not knowing. There’s no community of people to relate to if you don’t know what you’re dealing with. Often, there’s less empathy for problems that don’t come with a diagnosis. Many people find it hard to understand or relate to pains and problems that aren’t named. And only when there is a diagnosis can people understand what is happening to you.
“I’ve had undiagnosed symptoms for 40+ years. I was only recently diagnosed in 2016.”
“I was diagnosed back in 1987 couple flare-ups then and one about 25 years ago. Nothing since but extreme bouts of fatigue!”
“Now that I know what’s going on, it’s a lot easier to accept what’s happening.”
Although getting the news of your diagnosis is never easy, for some of you, the diagnosis was a turning point that brought some relief. The diagnosis meant that you now knew what you were dealing with. There was suddenly a map—a direction that others had taken, so at least you knew how to handle this place called MS.
“Wouldn’t have helped knowing early in because there was no treatment. Soon as I was diagnosed, I began treatment, which helped immensely.”
“Now that I know what’s going on, it’s a lot easier to accept what’s happening with my body. I may not like the diagnosis, but I can now get the proper treatment for my future.”
We want to say thank you to everyone who participated in this ongoing conversation about MS. We hope that this post, as with every other one we share, serves in shedding light on the experience of living with MS, and fosters a sense of connection and community among readers.
For anyone living with multiple sclerosis, nights can be a time of stress and worry. Just as you tuck into bed, spasms and tremors grip your legs and body, making sleep impossible. Some of you have just discovered this painful side effect, while others of you have been living with this symptom for years and have found ways to cope.
We posed a question Continue reading
Although each individual’s journey with MS can be incredibly varied, there is one common factor experienced by nearly all individuals with MS at some point throughout their journey with the condition: relapse. Relapses are all too common for individuals across varying types of MS, despite common misconceptions. Contrary to the names of the various types of MS, relapses can Continue reading
Most invitations sound great when they come, but for many with MS, it’s simply impossible to predict the way one might feel the day of the event. Symptoms can change, flare-ups can occur, and/or exhausting fatigue might set in. The desire to go may still strongly be there, but the physical strength and wellbeing are not. A response of “maybe I’ll be there” is often necessary for those living with MS, and sometimes, it’s the Continue reading
MS and some of its related symptoms, such as numbness, dizziness, weakness, loss of balance, tremors, and more, can lead to an increased risk in experiencing falls for those living with the condition. One of the MultipleSclerosis.net contributors, Devin, recently posted an article about his life with MS-related falls, and how he copes with these potentially frustrating or embarrassing situations. After this article was published, we received an incredible response from our community on their experiences with falling, and how they cope with this often-scary situation. Below are some of the amazing responses we received. Continue reading
For most people living with MS, summer does not bring feelings of excitement and joy. Rather, it’s a time of strategizing, planning and being careful to avoid the heat, which tends to worsen symptoms.
To start a conversation, we at MultipleSclerosis.net asked our Facebook page for tips and tricks to avoid summer’s worst. More than 500 community members reacted to the post, and 34 offered their strategies for staying cool and comfortable all summer long. Here’s what they had to say! Continue reading
Bladder dysfunction: often defined as urgency, leaking, frequent urination, and/or incontinence. Although bladder dysfunction affects 78-90% of people with MS, many patients experience feelings of shame, embarrassment, and frustration about their bladder-related symptoms.1 To better understand these challenging symptoms, we reached out to our MS community members to see how bladder dysfunction impacts their daily life, and what they do to control their symptoms. Continue reading
For some, saying the words, “I’m tired”, may indicate a lack of sleep, or perhaps the end of a long, exhausting day. However, for those living with MS, these two words can mean so much more. Fatigue is one of the most common, and one of the most life-altering, symptoms of MS. Of the many issues associated with MS, fatigue is one that can have the greatest impact on daily life and an individual’s ability to do the things they love. We recently published an article titled, “What I Really Mean When I Say, ‘I’m Tired’”, where our contributor, Calie Wyatt, compared MS fatigue to sinking in quick sand. Cali vividly describes her ‘biggest demon’ as her unrelenting tiredness, and how it brings her down every day. She also tells us how difficult it is to get others to understand what it means when she says she’s tired.
In response to this article, we asked our community members to help explain what their fatigue feels like to them, and the response was overwhelming. Continue on for some of the great responses we received.
Mental and physical exhaustion
Feelings of extreme mental and/or physical exhaustion are some of the most common descriptors of MS-related fatigue. Many of our community members shared how debilitating this experience can be each day.
“Living with fatigue is grueling. I have days where trying to form a thought, let alone a sentence, is nearly impossible”
“I try not to put myself into situations where I get fatigued, because it can be dangerous because I can’t think straight and get anxious”
“I am tired 24/7. It has become my new normal”
“It is a weight pulling you down! Mentally and physically”
“It feels like your body is shutting down and it’s too weak to hold you up”
“I try so hard to forget my fatigue & be active & fun, but it ALWAYS drags me down. My mind knows I’m fun, but my body just won’t let me. I must constantly fight my body & pick my battles to do the most important things”
“I would often say it is like I am being dragged to the ground which eventually swallows me up”
Others who aren’t living with multiple sclerosis, or who don’t have fatigue that comes from a chronic condition, may struggle to understand MS-related fatigue and the ways it limits activities. This lack of understanding can be incredibly frustrating. Not to mention the frustration that already comes with the fatigue on its own.
“Trying to explain this tired we have is almost an exercise in futility. The only ones who get it, are those who have experienced it! Nothing ticks me off like saying I’m tired and having someone say, ‘me too’. What I wouldn’t give to be their kind of tired!!”
“I am frustrated by my fatigue. For me, fatigue affects my ability to think straight as well as being tired. The hardest thing for people to understand is how much effort I put into NOT getting fatigued.”
“Sometimes I want to scream, if I wasn’t so fatigued! My fatigue and exhaustion consume me. I also have fatigue that alters my daily activities for many months at a time. Stress doesn’t help. A description I’ve often used to describe the fatigue is that I feel like my batteries have been depleted, removed, and I’m just running on empty. And I can’t find any way to recharge them, and there are no charged batteries to be found”
“The fatigue is dominated by frustration and some anger; compounded embarrassment”
“It is frustrating to try to explain to people that yes, I look tired but getting more sleep won’t fix it and is harder than it sounds!”
Physically cannot move, talk or breathe
MS-related fatigue can be so intense, that it may feel like quick sand physically pulling the body down. This feeling can impact a person’s ability to carry out basic functions, such as moving, breathing, or talking.
“I’ve felt like I am too tired to even breathe”
“I say I feel like a melting ice cream cone”
“I would often say it is like I am being dragged to the ground which eventually swallows me up”
“There are days that I feel like I can’t move. My extremities feel as if they are made of lead and my head feels all fuzzy”
“I have days that I feel too “tired” to breathe, talk, move…. it’s gotten bad though, I know, when I just don’t feel like it’s worth trying to say anything. It just seems like the thought of talking is overwhelming…and I take constant big breaths because I don’t feel like I am getting enough air”
“I feel constantly tired and dealing with that heaviness and sinking in quick sand feeling. And don’t really care to have others understand anymore because they simply never will”
“I feel like gravity is 15X greater over my body right now”
“MS fatigue requires all my energy for blinking and breathing”
It’s quite clear that MS-related fatigue is not only debilitating and real, it’s also unique and unrelenting. Our community members did an excellent job trying to describe this frustrating experience, however, it’s hard to fully understand this phenomenon unless you are living with it every day. MS-related fatigue can be a constant struggle, and the words “I’m tired” often don’t even scratch the surface of what’s really going on. These two words can take on a whole new meaning for those struggling with MS-related fatigue.
For several of our community members, financial stress is one of the greatest challenges of living with MS. In addition to budgeting for out-of-pocket medical costs and everyday living expenses, it can be time-consuming (and sometimes stressful) to manage medical bills, insurance claims, and paperwork. Recently, we shared
about living on a fixed income, and our MS community members responded by sharing their own experiences with the financial burden of MS.
Managing Unexpected or Underappreciated Costs
“The COLA index does not reflect the expenses that the elderly or disabled must cope with.”
“Living on a fixed income, there is no way I can afford the the meds that are recommended.”
“MRIs copay with my insurance is $700. Takes me months to pay it off!”
“I need an MRI and hope this time I can afford it. Couldn’t get one last year because of the cost”
“The bills (even with insurance and a fulltime job) are tough to keep up with…. never ending”
As described by many of our community members, living with MS is costly, even for those with various forms of private insurance and/or public benefits. In a 2017 ‘Cost of Care’ survey, 77% of MS community members said that paying for care and treatment caused financial strain for their families, and over 50% of patients skipped or ‘stretched’ their medication to avoid the cost of refilling their prescriptions.1 For many community members, the out-of-pocket costs of medications, tests, and procedures far outweigh your family’s income, especially when Cost-Of-Living Adjustments (COLAs) do not match increases in premiums. While your private insurance and/or public benefits may cover some costs, according to many MS patients, these unexpected or unappreciated costs can be challenging for you and your family to manage.
While the financial strains of MS are all too real, many of our community members have offered their own cost-saving tips for dealing with MS. While some community members recommend asking your healthcare provider about less expensive or generic medications, other suggest calling your provider’s office to see if they have any drug samples for your medications. Other patients recommend researching financial assistance programs or looking for drug coupons (often available on pharmaceutical company websites), or even ‘shopping around’ for the lowest costs for prescription drugs, tests, and procedures.1</sup
“I overheard a coworker saying openly, ‘All sick people are costing healthy people too much’.”
“It’s an absolute disgrace to work all your life and pay into Social Security and then have ignorant fools saying we don’t deserve it like we’re getting billions of dollars a month…One diagnosis can change your whole world, but they don’t think it can happen to them.”
“We are sick and cannot work!”
For many patients, one of the most difficult financial burdens of MS comes in the form of shame, stigma, or judgement from other people. As many of our community members know, public benefits, such asSupplemental Security Income (SSI) and Social Security Disability Insurance (SSDI), often fall short of the considerable costs of treating and managing a chronic condition. However, possibly due to the politics of government assistance programs, as well as a general lack of knowledge about MS, many of our community members have experienced ignorant remarks about the costs of public assistance programs, and even comments about what sick and/or disabled people do and do not “deserve”.
While it can be frustrating, angering, and downright hurtful to hear these stigmatizing remarks, only you and your family truly understand your financial situation, the challenges of MS, and what it’s like to rely on public benefits. While it’s unfair for anyone to discredit your symptoms and experiences, you may prefer to block-out these comments in favor of listening to the people who actually understand what you’re going through, such as family, friends, and fellow MS community members.
“I was diagnosed in 2001 and worked up until 2013… I worked hard all of my life and loved every job that I had”
“Every day I wish I had the capacity to work”
“MS took my career and the ability to support myself… I worked hard to get an education and my career”
“I had to take early retirement due to my MS”
“Within one year of diagnosis, I was forced to quit my job. I couldn’t afford my medication because my insurance copay for it was too high and I have had severe reactions to other medications.”
For many people with MS, “retirement” has a different meaning than it does for the general population. As described by some of our community members, your MS symptoms forced you to work less or even stop working earlier than you had wanted or planned, leading to frustration, as well as financial strain. Along with the loss of income to cover your out-of-pocket medical expenses, many patients share that they miss being able to go to work and accomplish something every day, leading to emotional challenges, as well as financial ones.
If you are no longer able to work due to MS, it is important to apply for SSDI as soon as possible, given the process can take some time (see below). If you’re experiencing feelings of frustration or isolation> due to no longer working, you can also reach out to the MS community for additional help and support.
Getting Disability Benefits
“I’ve been waiting 3 years for my disability… it’s been 2 years waiting for my court date”
“SS ROUTINELY denies ALL 1st time requests – you have to hire a lawyer.”
“A confirmed diagnosis of MS should be enough [to get SSDI]”
“It took me two years to get my SSI disability benefit… I had a lawyer, but it still takes a super long time…. I was in front of a judge just to argue to get my own money”
For some of our community members, one of the biggest financial challenges of MS has been applying for Social Security disability benefits. Typically, applying and being approved for SSDI or SSI requires gathering and organizing all of your medical records, as well as coordinating with your healthcare provider so that he/she can sign-off on your request. After applying for SSDI or SSI, several community members initially received a denial, requiring them to start an appeals process. If you need to appeal a SSDI/SSI denial, many of our community members recommend hiring a lawyer or advocate to guide you on the appeals process, which usually includes a court hearing to plead your case. While your lawyer or advocate will charge a fee, many do not send a bill until after your appeal is granted. According to some of our community members, you can also contact your senator or congressperson to (hopefully!) speed up the appeals process.
For people living with MS, financial burdens can come in all shapes and sizes. While some of you are dealing with unexpected or underappreciated costs, others are facing the need to stop working, or the ignorance of others who stigmatize public benefits. If you’re experiencing financial difficulties related to MS, we encourage you to contact the MS community for help and support, and share your story today.
- Editorial Team. “Show Me (more than) the Money! Results from the Cost of Care Survey.” MultipleSclerosis.net, Health Union, 30 Jan. 2017, multiplesclerosis.net/infographic/cost-of-care-survey-results/. Accessed 29 Mar. 2018.