Mehnaz's story: how my MS diagnosis affects my feelings of loneliness

This content mentions loneliness or isolation, which some people may find triggering.

Mehnaz is 26 years old and lives with her parents in Birmingham. She is a student nearing the end of her degree after her studies were interrupted by ill health leading to her completing a 3-year degree in 9 years.

Seven years ago she was diagnosed with Multiple Sclerosis, as a result of which she tires quickly when walking, and has memory and concentration issues, as well as various other MS-related symptoms. Her diagnosis is a major factor in her loneliness. However, loneliness has been part of her life since leaving sixth form college.

That led to me isolating myself from everyone, literally everyone in my life. I think my loneliness started after I had left college. Going from school to college, I was kind of still in the same group of friends. University was a big, massive step because it was like, now I'm in an institution where I don’t know anyone. I think with university you meet people from all walks of life. And because they're not all from the same city as I am they're kind of different. And I'm not used to that differentness.

Photo of Mehnaz

While she has made friends, she hasn’t felt able to build real connections

I was speaking to people and making friends, but it was making friends just for the sake of it, just so that I have someone to sit next to. Not […] because I really connected with them.

When she is around people at university her loneliness can feel worse:

To my left and to my right there are people and they're with their friends. And I can hear them having a good time together, but I've never had that at university. [...] When I see other people really connecting, and then, I'm like, ‘oh, I don’t really connect with anyone’.

Since her diagnosis, she has felt even more separate because she keeps her condition secret. She believes people will reject her if they see her as disabled.

I did realise very shortly after I was diagnosed that actually what I have is seen as a disability. And then, I don’t know why, but in my head, I was like, ‘no one likes disabled people’, and ‘no one would want to be friends with a disabled person’, even if this is not true.

One of the very few people who she has felt genuinely connected to in recent years was one of her lecturers to whom she talked about her diagnosis.

For Mehnaz, feeling lonely can bring up a range of difficult emotions that can be hard to escape

I feel disappointed in myself, like, ‘seriously, did I really not make any effort to connect with people and stay friends with people after they’ve graduated? I don’t want to be stuck in that cycle […] because once you are completely down below, it’s going to be very difficult to get up.

She finds that feeling lonely can take the joy out of life and make it harder to build relationships. While Mehnaz speaks to people, it doesn’t feel natural and so it does not feel fulfilling.

I think I do put the effort in. Like, when I'm speaking to someone, I'm pretending to actually really like what they're doing, and I pretend to be really interested in what they're interested in. even if in reality, this is actually not true

She knows she has very high expectations of her friends but feels she needs to find the right person for the friendship to be meaningful:

I think it’s the fact that I'm putting a lot of expectations into what I want my long-lasting friends to be like. I do think I'm looking too high. But then if I lower, in a sense, my standards, then it’s not really going to... I won't be fully fulfilled.

Mehnaz has joined peer support groups for MS on Facebook but has found this is not always helpful as people often focus on negative aspects of the condition. What Mehnaz really wants is to have friends she can openly share with, as she did with her lecturer:

I wish I had a group of people […] that I could tell anything to and know in my head that they're not going to judge me’. and this is not going to affect us talking or us being friends anymore.

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