When Your Caregiver Doesn’t Care

Sometimes you just need to vent, this is one of those times.

It is so hard to understand how someone that lives with you day in and day out does not accept, remember or understand that you are suffering from a chronic health condition. I can’t speak for you, but it feels as if this is what I experience on a regular basis. I don’t get it. I don’t understand why there is no empathy, no desire to help  or even notice when I am having a bad day because of fibromyalgia. It feels so… wrong.

I certainly do not want to be waited on hand and foot every day, nor do I ever expect that, but when the bad days come around, as this day after Christmas turned out to be a bit harder than I thought it was going to be, it would be such a comfort to know that I had someone to count on. It is frustrating to feel like a burden, to feel like any favor I ask for is only a thorn in the side of the person I hoped would care for me at my most difficult  moments. The lack of empathy or concern is so evident, I can’t help but wonder… do I even matter?

I know I am writing this for all to see, but it is simply a representation of how I feel, of how it feels to be in pain to be overly fatigued and feel so utterly alone. Moments like these, I wonder if it would be better to be alone than to wish that the one person who is available would pay attention. To have pleas for help be answered with ill temper or obvious frustration is nothing short of sad and at moments truly heartbreaking.

Does he not recognize how much work I have put into Christmas, how much time and energy I have spent to create a wonderful holiday for our family? This is the price I pay… the exhaustion, fatigue and pain. It saddens me more than I know how to express…this feeling of not being cared for. It is a feeling, an emotion, and I am certain it will pass. But at this moment, it has me feeling lost and desperate for a different kind of relationship.

It must be challenging to face days like this as the “caregiver” and it must be hard to put yourself in the shoes of the one in pain. It feels as if the illness itself has never been truly accepted in my situation and as if there is a fair amount of denial practiced. What would it mean for him to accept the fact that I have limits, that it is hurting my health (emotionally if nothing else) to have to push forward without assistance or understanding? What do I need to do to prevent these kinds of emotions from building up and to realistically look at my expectations, are they reasonable, am I asking too much?

My wish for anyone who is suffering from a chronic illness, is to have a partner or loved one who is willing and able to lovingly care for you during your bad days, even if they are many, to help you to feel comfortable and to remind you that you are loved. For now, I’ll take comfort in knowing that it could be much worse and that tomorrow will be a brand new day.

16 thoughts on “When Your Caregiver Doesn’t Care

  1. Though I don’t struggle with the same condition as you, I have felt this way in relation to being pregnant and on bedrest, or after having a baby, or while coming off meds for depression. Those times when I am most vulnerable, or have even been medically instructed to TAKE IT EASY, and still the load is barely lightened at home. And the lack of emotional (as well as physical) sympathy, too. It’s so frustrating, and I have to dig deep to find a place where I can be forgiving (while also finding the strength to care for myself). I understand the venting here – just wanted to share that and encourage you to hang on.

    • Thank you so much Stacey, it’s nice to know that someone else understands how it feels. Digging deep is definitely essential. Thank you for the heartfelt encouragement, I really appreciate it!

  2. Oh sweetie, I’m so sorry that the day after Christmas has turned out to be so difficult for you. The dynamics of marriages can be so unique to each couple but in the short time I’ve been reading your blog I can gather he’s probably a pretty terrific guy, and you’re just not feeling it to much on this day! I know this may sound contrary…. but when I’m not feeling the love or appreciation from my husband I’d like I go and give him a back rub, or leave him a love note on his desk or do something nice for him, the returns usually yields benefits . This gets him to meet me half way when he know’s I’m annoyed and it always helps break the ice for honest conversation about what’s gotten me upset ( get the back rub first!). Believe it or not they’re afraid to come to us, they don’t know how to handle us when we’re emotional and in pain, men can be real chickens and kinda dumb sometimes. I’ve been married to mine for 30 years and he still sometimes doesn’t get it, it’s just part of being human, you just have to love them anyway; and yourself of course.

  3. Amy, I’m glad you could let out what you were feeling here, and not keep it bottled up inside. It must be terribly difficult to be in that situation, where I guess what I’m hearing most is that you don’t feel heard. What you’re going through is not honored. For me, it’s like when I was finally admitting that because of the PTSD I really couldn’t go back to work, and a family member seemed to forget that and made a “suck it up” comment that was terribly confusing. As if what I was experiencing was not valid.

    I hear that happening for you, and I’m sorry you’re going through that.

    Dan

    • Thank you Dan, you described it perfectly. Thank you for your kind words and support. It is very trying but I know I am not alone.

      I have experienced that same kind of sentiment, the “suck it up” mentality from others. It is very discouraging and confusing, even flat out painful. I should make sure to say, that I know it is difficult from the other side as well. It is altogether a challenging circumstance. Thank you so much for relating.

  4. One of my greatest fears is that my husband sees me as more of a burden than a companion. I am grateful every day that he is as kind and patient as he is, but I know I ask a lot of him. I try to make the days on which I feel better than others be special and I try to go out of my way to do small, kind things for him. It’s hard to live with a chronic illness knowing that your partner is living way more days “in sickness” than “in health” and, from my perspective, he does way more than his “fair share.” It’s hard. And it’s not fair to our partners. But it is life, and it is who we are as part of the relationship. I have my set of challenges from living with a disability and he has his set of challenges from my living with a disability.

    May tomorrow’s brand new day help you both draw closer to each other and better understand one another.

    • I can certainly understand that fear, as I do feel I am so often a “burden”. I am so glad to know that you have a wonderful caregiver. It is so important to let them know how appreciated they are, for so often caregivers really do so much!

      I wish I could say this day has been brighter and filled with more understanding, I’m afraid it’s been the opposite, but there’s always tomorrow! =)

  5. This is a subject I was thinking about a lot recently. I have been lucky to have a caregiver that has really come to understand how I am feeling, and is incredibly supportive. I think the best advice I can write is don’t ever give up on your caregiver as long as they haven’t given up on you. It must be incredibly hard to be a caregiver, and those of us with mental illness or chronic pain ask a lot.

    You wrote a great blog post, has your caregiver read it so they know how you are feeling? It would be a great segue into talking about your respective limits.

    • I am so happy that you have that gift of a caregiver that is so supportive! You raise some very important points in your comment, too.

      1. We do ask a lot of our caregivers.
      2. Communication is so important.

      It’s hard to answer your comment without feeling like I am giving too much information, and my perspective is, of coarse, biased and one sided. I really appreciate your thoughts and comments, great words of wisdom!

  6. Thank you for sharing. This is exactly how I feel everyday and especially today. Fibro is being particularly nasty and I also have pelvic inflammatory disease and bacterial vaginosis right now. I returned to the clinic today for a follow-up appointment, only to be treated like I am crazy… again. I snapped at the clinician and spouted words like”invade my body” and unpleasantries that made her lower lip quiver. I feel like an absolute jerk but sometimes we fibro sufferers get no respect and no concern. It’s 5 minutes on us, 2 hours on everyone else.
    I hope you are feeling better, and that you feel a bit more support. We’re all in this together. Thank goodness for that! Though near and dear ones may not always understand, it’s great to have a blogging community that is able to provide comfort. Bless you.

    • I am so sorry that you are going through so much! I snapped at my kids tonight, trying to explain how limited my energy is to them as they were complaining and wanting things I couldn’t give them … it’s just tough and it is so hard for others (especially children) to understand. I hope that you find the support you need, too. And indeed, it is a blessing to have a community of bloggers and online friends who “get it”! ❤

  7. Wow — I have totally been in your shoes, despite the fact that I have a generally supportive and loving husband who groks, as well as anyone who hasn’t been in these trenches can, that I do my best to do what I can. Sometimes I have to re-learn a lesson I learned early in our relationship — that he’s not psychic and the things that seem so incredibly obvious to me (I’m exhausted, I’m in intense pain, I’m having a horrible day and can’t take care of myself much less the munchkin, etc.) are not always as clear to him as I think they should be so I need to ask for what I want in clear terms. He’s an engineer, and hints just don’t work most of the time. *But* I’m lucky that most of the time, if I ask for what I want and/or let him know I think such-and-such will be an issue for me and I might need some extra support to get through it, he’s right there for me.

    Mind you, I still have days like the one you describe. And he has bad days too, even though he’s generally healthy.

    Meanwhile, thanks for putting into words what I know many of us feel! (I came here after seeing your comments on MedHelp.

    • Thank you so much for visiting my blog, for relating and sharing! Those bad days are just so tough some times, it really helps to vent, and then it feels really good when people like yourself comment and say, “Yeah, I’ve been there too!” Thank you for that!

      It is so true and important to remember that we often need to speak up and ask specifically for what we need, our loved ones are not mind-readers. And, likewise, even those who do not deal with chronic illness have their own bad days, compassion is especially important in our relationships, going each direction.

  8. Hi again! I just had to come back and correct myself — although I’ve seen you on Twitter for quite awhile, I found your blog, and this post in particular, from your comments on Ellen’s post on WEGO Health, not MedHelp. Eep!

    I’m so glad you wrote about this topic. It takes courage to write so honestly, especially about our families and partners. There’s a vast range of stuff I wish I could write about on my blog but don’t have the courage to do so because my extended family and my inlaws all read it regularly. I’ve had thoughts about starting a second, more anonymous, blog where I could feel free to vent about the people who love me without hurting them or starting family-wide gossip about the state of my marriage (which is actually really good, but really good is not always perfect — none of us are ever perfect, nor our relationships. And sorry — I know I’m preaching to the choir here. :-).

    Thank you!!

    • Thank you so much, especially for coming back! I thought I knew you from WEGOHealth. I am so happy that you came over to read my post and comment.

      You know, I have often considered the anonymity issue. It sure would be nice to be able to really air it out and vent the way I would like to sometimes! I never want to hurt anyone with my writing, so I usually refrain from speaking about others, especially family, unless it is in a pretty general way. Sometimes I would just LOVE to be able to share my real and raw feelings without worrying about who might read it. I try to be as real and authentic as possible, and sometimes it is good that I have that checks-and-balances with the knowledge that family could be reading. I like that rule, “If you don’t have anything nice to say, it’s better to say nothing at all.” Although, obviously on this post, I wasn’t thinking as much of those words at the time, I was only able to focus on how hurt I felt.

      Still, I don’t actively publicize my blog to my extended family, but I don’t hide it either. For some reason, some things feel easier shared with strangers than those that are closer to me. I fear more judgment from people I know than people I haven’t met yet. But regardless, on this blog, judgment has no room. And it certainly won’t be coming from me!

      I got off on a tangent there, LOL. All relationships have challenges and I thank you for reading when I have shared mine. ❤

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