How does MS affect mental health?
Multiple sclerosis, commonly known as MS, affects around 100,000 people in the UK. The condition causes your immune system to mistake myelin, the coating that protects your nerves, for a foreign body and attack it.
Most people with MS are diagnosed in their 40s or 50s, but many will notice their first symptoms years before they receive a diagnosis. The condition affects almost three times as many women as men, and causes symptoms such as vision problems, dizziness, fatigue, bladder problems, and stiffness. MS can also affect memory, thinking, and emotions.
In recent years, diagnoses of women aged between puberty and menopause have risen, leading scientists to believe that hormones affect development of MS, and potential treatment could lie in using hormones.
“We don’t know for sure why MS affects more women than men, but there are indications numbers have grown over the last several decades,” says Dr. Susan Kohlhaas, director of research at MS Society. “So, there is growing evidence and thinking that it’s actually related to hormones, and it could be that testosterone has a protective effect against MS.”
Given the nature of the condition, it is unsurprising that a diagnosis can bring about a whole range of mental issues. These remain under-discussed, however, and for many women, a diagnosis between the ages of 25 and 45 will come at the same time as other serious life events – career development, starting a family, or seeing your family grow up and leave home.
The effects of MS on mental health
Prior to diagnosis women may experience mental health effects, coming about from anxiety over waiting for a diagnosis for symptoms. On top of this, negotiating simple day to day tasks while experiencing a flare-up can bring about low mood or even depression.
“I think this is a really complex area, and one in which MS Society has funded some research, that shows that anxiety is quite high in people with relapsing and remitting MS, the earlier stage of MS in which people perhaps don’t know what their MS will be like in the long term, and that tends to be higher in women than in men,” says Dr. Kohlhaas.
Depression, on the other hand, she continues, is linked to later on in the course of someone’s MS, when perhaps people are experiencing more symptoms, and higher levels of disability.
“We also know there is a complex interaction between mental health and symptoms related to MS, such as fatigue, and fatigue is also linked to depression, and anxiety,” adds Dr. Kohlhaas.
Amy Mackelden, a writer, is currently working on a theatre show called ‘MS is My Boyfriend’ in a bid to uncover some of the secrecy that she says seems to surround MS in the public eye.
She is one such woman who found her mental health impacted by both her symptoms and her diagnosis. “I’d felt unwell, on and off, for a few years prior to getting diagnosed,” she says, “But I was advised to exercise and wait for my fatigue to improve.”
Amy was also forced to change her diet, as her body was no longer able to process gluten, but after a test for coeliac disease came back negative she was made to feel that she’d been making it up – “a common feeling when you have a handful of symptoms that no-one takes seriously”.
In some respects, it was a relief for Amy to be diagnosed, as she finally had an answer for all the symptoms she had been experiencing over the years. However, the knowledge that she had a lifelong, degenerative disease understandably hit her hard. “I cried every day for a long time,” she says, “and I felt extremely stressed.” She also became extremely anxious and stopped sleeping properly.
While previously exercise had helped her manage her anxiety, this stopped working, and she started taking prescription drugs to manage it. She also saw a counsellor and went to a group class on managing anxiety, both of which helped her begin to put her mental health back together.
Anxiety in early MS
Diagnosis of a chronic condition is extremely tough, which is reflected in high levels of anxiety among women who have recently been diagnosed with MS. “This is a stage where people will be getting MS attacks that are unpredictable in length and severity,” says Dr. Kohlhaas. “They’ll be getting attacks at random over the course of several years, then bounce back from attacks, we don’t know for certain when the next attack will come.”
This uncertainty occurs when you’re thinking perhaps about your career or your family, in your 20s and 30s, and can hit women of this age particularly hard.
Indeed, it was this aspect of diagnosis that affected Amy particularly badly. “I thought my career was over,” she says. “I’d always wanted to pursue a career in the entertainment industry, and felt as though this would never happen now that I was disabled, especially if I couldn’t work the long days needed.”
However, a year after her diagnosis, Amy quit her part-time teaching job and took some time out. She moved back in with her parents, which gave her some time to figure out what she wanted to do and how she would proceed.
“Some people thought I’d end up worse than before, and perhaps never find a job that fitted in with my illness,” she says. “However, the time out gave me the chance to pursue the writing career I’d always wanted.”
In fact, a pop culture blog she had been writing with a friend for years went viral, and, eventually, Amy ended up working as a weekend editor across Elle, Marie Claire and Harper’s Bazaar.
How do people with MS respond to anxiety?
“Every individual will have a different response, and way they want to manage their MS and the uncertainty that comes with it,” says Dr. Kohlhaas, adding that at MS Society they encourage women to seek out support groups and build a network of peers, family and friends to help them through hard times.
Amy has now definitely been able to see how mental obstacles can be overcome. After her initial counselling sessions enabled her to manage anxiety and carry on with day to day life, she believes that, in a way, her MS diagnosis pushed her to follow her dream of being a writer, and she was able to channel the anxiety surrounding her condition into pursuing a career.
“I felt like I had nothing to lose, and writing was a job I could pursue from anywhere, including from my bed. I love my job, and am so grateful that I get to do my dream job,” she says. “My MS matters a lot less to me now, and although it’s still there, it’s one of the less important aspects of my life.”
However, Amy acknowledges that not everyone will be able to come through mentally like that, and she encourages women who have received a diagnosis to get help. “If you need extra support, whether that’s a talking therapy, or a medication, there’s nothing wrong with that. There are still stigmas attached sometimes, but having a lifelong illness is hard. It’s okay to reach out and get the help you need.”
She also stresses the importance of giving yourself rest days. “On those days, be kind to yourself, recuperate, and when you feel better, strive for what you want.”