Living with a chronic health problem can be awfully isolating. Likely, even if you’re the most social person, there’s no one with whom you can share your daily challenges. You might think it would be easier if you could find someone who also has these challenges. But there’s this — mutual sharing of health problems can be overload. Just ask any 85 year old living in an assisted living what it’s like when everyone is in as bad shape as you and that’s all anyone talks about!
But until you get to that point in life when the rest of the world seems to have finally caught up with you, it can seem like you’re the only one who lives with pain, fatigue or debilitating symptoms. It can seem pretty lonely.
I hear so often: “Do your other clients have this problem?” “Are your other clients in as bad physical shape as I am?” “Does anyone else feel the way I do?” Each time I hear this, I can only say, “Yes, this is very normal“.
But how would you know what normal is? Few people share their experiences with health problems beyond their close circle of friends and family. Normalizing chronic health problems is not an easy thing to do.
Why? Because most people respond to any statements about illness with blank stares or sympathetic clucks and the conversation goes stale from there. Unless there’s a really good reason to bring it up, it often feels easier not to go there.
I’ve seen that learning to share your experience with others in ways that allow you to feel affirmed, whole and well balanced rather than a freak with 3 heads, is an important step toward integrating invisible and unpredictable health challenges.
What do you think? How is this going for you?
Jennifer says
You often make me laugh Rosalind! It is lonely and I have no advice…it always goes just about as you’ve described above and I have not invented anything better 🙁 The other issue I would add to this conversation is often feeling that friends see me as a charity case (during the blank stare)…I am not achieving in the same ways they are and I feel, rightly or wrongly, they see me as a “sad sack, charity case because of illness”. It makes me feel like I am supposed to assume the role of victim/charity case/ lesser valued individual who accepts my lot in life… but the way I feel is “I’d be a big shot just like you, or you boss even, if I didn’t get this crappy disease…I just had bad luck…” Not sure if this makes sense to anyone else, but it is something I still grapple with as I seek/hope for validation and usually don’t get the understanding I need and actually end up feeling put down.
Debra says
I think it’s important to have a support group of people with whom you can talk openly about your health experiences and challenges. I go to a therapy pool and have met many people there with whom I can be open. They are empathetic and compassionate, because they all struggle with pain and illness, too. A support group for people with illnesses can also be helpful–lots of churces and Jewish Community Centers offer them. In my Buddhist community (Buddhism directly addresses suffering, its causes, and how to end suffering) there are many, many people who’ve been through traumatic situations and deep struggles, and we all share the painful things we’ve been going through. I avoid spending time with people who I have to be fake around…I prefer to be authentic with my friends and family, and save my “happy face” for colleagues and acquaintances. They may get tired of hearing me talk about their health problems, but I also get tired of hearing them talk about their relationship and work problems!
Karen says
I liked the article. I find that I get frustrated in attempting to talk to people about my symptoms. I look good. We all know that story. So, if I say I am struggling with fatigue, muscle aches, memory issues, I get the “we are all aging” or “I have those exact problems”. I am so tired of those responses, that I find it easier not to talk about my issues. Maybe I feel belittled?
Rosalind says
I have a hunch it’s about all these things.
Rosalind says
It sounds like you’ve been able to create a universe in which you’re wandering with fellow travelers. And it sounds like it’s working for you. Good stuff.
Laurie says
I don’t know why but I’ve always expect to just share myself and be accepted. I definitely haven’t received the kind of responses that justify this, but I keep on doing it because there seems no other way to be. I’ve learned not to disclose as much information to people who can be in a position of power to hurt me (such as a boss who is unsympathetic to the effects of a chronic condition). Not disclosing so much information can be a good thing; but the people who are accepting and non-judgmental make it easier. I don’t try to load them up with too many details because it’s overwhelming for them to think about, just as it is sometimes overwhelming for me to keep surviving and taking care of all my responsibilities while dealing with these interruptions of so many physical symptoms and depression and anxiety that takes incredible discipline to manage. I just have to remember that I am doing this, I am doing well, God has created me for this moment, and in him I find joy knowing that though I fail and though it is hard to keep up with everything, he is there and he is proud of my efforts, and proud to call me daughter.
Dana says
Whenever I feel crummy and tell someone else it usually turns into a game of one-up-manship. The other person starts telling me how bad they feel and and it is always a long story and much worse than I feel. Usually I appreciate hearing their story, thinking, well at least I am not as bad as them, but I would love to have a hug and someone to tell me, “It’s going to be okay”. I never get that piece.
Prasad says
Thanks for a great post and could totally relate to it. I feel Sharing our rants/experiences about illness to someone who is undergoing similar situation could be definitely good for us. I think online support groups are a great way to go about it. It helps us to know that “we are not alone in this journey” and allows us to express ourselves freely.
I personally don’t feel like sharing my health problems with colleagues at work. But having said that, whenever I feel that conversation among work friends is heading towards “heatlh front” topic, I do explain a bit about my situation without going in to great details. Just so that, when I do have a bad flareup they are not surprised to know about my illness.
In general, people react differently when we talk about our illness. I ensure that I have explained myself clearly to the people who matter to me the most. For others, I tend to ignore and move on without dwelling on it too much. Patience, tolerance and will power were some of the things I learnt growing up with my illness. They never fail to help me overcome such road bumps !
Ciao n Peace.
Rosalind says
Thank you for this thoughtful comment! You’ve certainly used this as a ‘learning opportunity’ and I admire that.
Taylor says
I struggle with chronic illness and instead of feeling ashamed or hiding it, I have decided to tell everybody who will listen. We cannot change the way chronically ill patients are treated, or how they feel about themselves, without raising awareness for chronic conditions. If nobody knows the pain, sadness, and fear…how can we change it? How can we help the situation?
Rosalind says
I agree that we have to share what’s going on. I know that I do. I think it just depends on what we say and when – my booklet, Are you talking?, goes into this in detail.