Living with a chronic illness can be extremely lonely

I think one of the hardest things about living with a chronic illness is the pressure from certain people to just get better. It’s almost as if they think I have this secret power tucked away in my sock drawer that will rid my body of all the symptoms, difficulties and struggles MS is causing in life, but for some unknown reason I choose not to use it.

When I am unable to join in on the outings, parties, dinners and shopping trips people are taking part in, the vibe I get at times from them is one of doubt that things could actually be “that bad.” I can almost see the thought bubble above their heads as they wonder how it is I can go from feeling okay one minute to feeling like crap the next.

The best thing anyone could ever do for someone living with a chronic illness is to allow them to decide how they’re actually feeling and what they are capable of doing. I like it when people leave it up to me to decide what I can and can’t do, and are okay with my decision. After all, it’s my body…it’s my life. I should now how I’m feeling.

Those that love me enough to give me the option to choose and are okay if my decision is different than what they want or planned for…those are some of the most amazing people on the planet. No one should ever have to spend time defending how they feel.

Living with a chronic illness can be extremely lonely and amazingly enough it’s possible to feel that way sitting in a room all by yourself as well as in a room full of people. Sometimes you just want someone to sit by your side and simply be there, to give you a hug, to listen, to care.

When you find yourself sitting in a puddle of your thoughts wondering where everyone has gone, know that there are others with MS who understand. We may be separated by miles and miles of distance and separated by oceans and seas, but we are connected through wires and keystrokes. We are in this together. Sending a virtual hug your way today.

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About the Author

Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

52 replies
  1. Tina Thompson
    Tina Thompson says:

    You have to be your own advocate and I’m finding that out more and more. People don’t understand or want to understand that I have limitations. For example: I have two family events this weekend and I thought long and hard on how I would be able to handle them both energy-wise. I also work full time and this week was very busy. I have an hour drive to and from work. I have four chronic conditions and have also been struggling with an upsetting stomach issue. After thinking it over, I decided it was best for me to commit to only one event and it was the one I had originally commited to and was being held for an immediate family member. I was still “encouraged” to go to the second event even though I explained my reasoning very clearly. It makes me feel guilty for not ‘trying harder’ when I’m already over max energy capacity all week to begin with.
    But, I’m the one that lives in this body and I know what I can handle and what I can’t. I have to rest enough to make it through the next week. Being your own advocate is tough but necessary!

  2. Patti Obrist
    Patti Obrist says:

    Sometimes it goes in the opposite direction, when you’re actually feeling well and people try very hard to illuminate the illness for you, just in case you had forgotten 🙁

  3. KT
    KT says:

    Thank you for your words. It is a very lonely world when you have to defend yourself all the time. Most people around me think I am just faking it to get out of work, sadly some of them my own family. I would give anything to have a full time job again. To be able to support myself and not have to rely on my husband for everything. I feel for everyone going through the same type of issue. No one deserves that. Big hugs to all of you:)

    • Stephanie Beck
      Stephanie Beck says:

      KT, I am right there with you. My mama and both my sisters just think I got “comfortable” being at home and they’ve even used the term lazy many times. It took 5 years for my disability to go through and one of my sisters made the comment that she couldn’t believe I was going to accept my disability benefits and rob someone who really needed that money so I could just sit at home all day. I wouldn’t wish my MS on anyone but sometimes the ugly side of me comes out and says that I sure do wish they could walk in my shoes, literally, for just one day.

  4. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    I like the video, it’s as good as the smile video from Sia, (She’s a singer). Sometimes people think we are ‘sick’ and need specialty care and looking after. This may be good for some people but it doesn’t help us being who we are.
    We have a society here that is called MS and PD Center. They helped me when I first got diagnosed but the big problem with them is there is a lot of sick people there.
    We may be damaged and have enormous problems but we CAN do things for ourselves, it just takes longer and different from them. That doesn’t mean we don’t need help just we are still ourselves and should be treated as such.

  5. Jeanette Ford Lujan
    Jeanette Ford Lujan says:

    This is truly one of those many things that mount up the pressure to the struggle of having MS. Some days you are capable of complete independence then the next two days you need help or can hardly get out of bed. So hurtful when people around you refuse to recognize this pattern. None of us choose this beast of a disease, it high jacket our bodies. Our. brains doesn’t work like “normal” people’s work. It cause pain, effects balance, memory loss, strength and leaves us emotionally drained. Trying to “fit in” aces us out of social lives and starts to isolate us. We all want to still do the things we use to do, like everyone else around us.

  6. Allison
    Allison says:

    Hi Penelope. Hugs to you too. Thank you for your most excellent blog. It reminds me to choose my attitude, to keep moving forward, and to be my own best friend. It works, especially on dark days.


  7. Paul Farrington
    Paul Farrington says:

    So lucky to have a family that know how I feel my wife is so understanding about how I feel and my kids are brilliant

  8. Joyce McManamon
    Joyce McManamon says:

    I go see my MS Dr this coming week. I have been feeling a lot of issues come about that i know my MS has taken a downward slide. It’s getting harder for me to walk w/o any assistance so when I’m home i use a cane a lot. Give something to hold on to so I can keep my balance. Some days i hear at home, if you get out and walk more you’ll do better. My dr will tell me on Thursday.

  9. Beth Ferrari
    Beth Ferrari says:

    I just got confirmation a few months ago that I have MS. It’s not active or progressive. I’ve had at least one attack…ie all the internal battles I have and not so visable on outside. My family is trying to understand…how can I explain something that I am trying to understand myself. Every day is an adventure. Hopefully one day my husband will quit asking “what can I do?” when I’m having a extremely long and painful leg cramp and he just rubs my leg and foot then holds me afterward.

  10. Martina Reck
    Martina Reck says:

    I never get really understood when I say I need time to recharge my batteries. It seems everybody thinks that I’m faking my illness, I’m just lazy

  11. Aileen Brown
    Aileen Brown says:

    I am lucky with my closest friends who altho not MS are suffering so we can laugh and rant and understand one another but yes I hate the look so well brigade most of whom are thinking nothing wrong with her we should all be Oscar nominated!!!!!

  12. Ellen Hicks
    Ellen Hicks says:

    It is certainly frustrating having invisible challenges. The world only sees physical disabilities when a wheelchair or cane is present. Our world seems to admire physical abilities and sunshine attitudes. Sometimes the real heroes do not bring attention to themselves! They just deal with the daily challenges.

  13. Gaby Brückmann
    Gaby Brückmann says:

    Hi Penelope I`m new here. I have MS since 26 years but since about 5 years my walking gets badder and badder. I want to join the discussion. I enjoy to read the posts because I have nobody around with MS. I`m from Germany and I hope you can understand everything that I write. I look positive in the future but somethimes it`s really hard. I´m a little afraid where I will stand in about 10 years. But together we are strong! 🙂

  14. Jo Maxwell
    Jo Maxwell says:

    That is the exactly the reason why I go to my MS self help group! We need to be around those who understand! I think it is virtually impossible for others to understand. I am so glad you are here to share your triumphs and fears. We are with you!!

  15. Gail M. Ferguson
    Gail M. Ferguson says:

    Ha! Sooooo, true! I was once told that since I wanted to feel better the next day, ” well that should motivate you to get well!” I quickly said,”oh yeah, because I am God!” It went on a bit after that but I ran out of the room and proceeded to get in the shower and cried my eyes out. Sadly it was the one time through this disease my husband didn’t believe she said anything wrong. The sparks flew from there. Of course the spark was ignited by his queen bee sister. She who can do no wrong.

  16. Lynda Cox
    Lynda Cox says:

    People always comment and say you are looking well there can’t be anything wrong with you, you can’t have MS- wrong, it’s a façade we always put on. It’s only our nearest and dearest who really know the truth of how we feel!!!

  17. Valarie Ellen
    Valarie Ellen says:

    It is so difficult to listen how I should try harder, do more, etc. Like REALLY. . . . . . .I don’t choose how my body/mind is going to cooperate at any given time. Sometimes the most “helpful” comments hurt the most!

  18. Fay Wisniewski
    Fay Wisniewski says:

    I’m always bemused by people telling me they ‘FORGET’ I have MS. Well I don’t, it’s with me every single day and nearly everyday no one asks me how I am. It’s not a sympathy vote just an aknowledgment would be nice, so I could at least talk about it. Maybe people just don’t know what to say…

  19. Leslie Beaver
    Leslie Beaver says:

    Something that I thankfully have never experienced. Sadly, I think that this is a sexist stereotype. “Dear, it’s all just in your head”. Which it is of course. Just ask our neurologist. But you get the point.

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