Lonely Vol 10.8

By amypollock82

2 min read

When you are alone with no one and you are going through the worst pain yet you at least in your life you know what to expect living with it makes you adapt.

Loneliness with RA

You go home to no one.
You eat alone.
You do everything alone.

To me this is strong to do as I’ve done it many times.

Marriage and loneliness

When your married and have some family that you think you would can talk to but you don’t because They just don’t understand... Literally they just can’t empathize with what you are saying or trying to explain how you feel regardless of the way you say it.

I can feel more lonesome when you just want some one to understand you.. get your moods, and your fatigue, your days you can’t do a thing (which has been all the time lately) they can’t understand it. It looks lazy and it angers husbands that work hard for our family and yet feel as tho as if they don’t do it that it won’t get done and he’s usually right lately.

You don’t complain to him, I can’t explain the new things happening because he’s done so much already.

Some think I can just get up and go do the errands I needed to run but I literally can’t no matter what I try...

Just another thing my husband has to do. I feel so much guilt that I can’t contribute to this family even the mundane.

I feel sorry for him and my mom for having such patience with me even tho I insisted on marriage counseling and yes it works.

Who can I talk to?

Yet you still have no one to talk to about the intense pains, the random symptoms that are hard to watch but can’t be ready for everything that can happen. It’s worse when the only thing you’re doing and you just sit in a chair somewhere in the store because I can’t finish the shopping.

I need understanding

It’s that I can’t walk without a cane or worse a cart.
It’s the only way and I hate it. I’m a chore. It’s humiliating.
You don’t have anyone who truly knows who you will be considering my changes from my diseases since they change our life.
How can your significant other truly understand that life is to change and that is the only thing you can count on. Is that my life will never be boring.

When you marry the love or life and make those vows for better or worse. The last thing on your mind is worse part.
Then the worse comes and you don’t really know how a person will react...

They vow to care for you and go through thick and thin together forever. I’ve realized words are one thing and actions are another. Some can’t handle the weight of a chronic disease. Some try and just don’t understand.

I blame no one it’s just lonely married too!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Erin Rush Community Admin
Wow, Amy! I think you really hit the nail on the head! The loneliness if living with a chronic condition like RA is a unique creature. RA can feel so very isolating, even when you are surrounded by people that love and care for you. I am so glad you took the time to write your thoughts on loneliness down and that you shared them with the community. I hope this is a place that helps you feel a little less lonely -- you are not alone in your RA journey here! Thanks for being an active part of our community! Best, Erin, <a href='http://RheumatoidArthritis.net' target='_blank'>RheumatoidArthritis.net</a> Team Member.
Mary Sophia Hawks Moderator & Contributor
Oh Amy! My heart hurts for you. You have beautifully expressed the agony of rheumatoid disease. You are correct, our loved ones cannot understand. But because they love us, they are willing to love you even when they don't understand. I'm sure there have been many times in your life when you have been a blessing to your husband. Remember how good that felt? Don't deny that to your husband. Men like to feel that they are taking care of their wives. There is no one who understands our pain, life change and frustration, unless they are bearing this too. That's why I rely on <a href='http://RA.net' target='_blank' rel='noopener noreferrer ugc'>RA.net</a>, because I have no one who truly understands. So I come to this site when I need to know that I will receive commiseration and encouragement. Please hang in there and know you are among friends here. I wish you peace, Mary Sophia <a href='http://Rheumatoidarthritis.net' target='_blank'>Rheumatoidarthritis.net</a> moderator/author
L rick Phillips Moderator & Contributor
Many time in my life I have been unable to walk without a cane or walker and I also hated it. I am not physically fit yet, but I am far better, my RA is better under control than ever. That is what I hope for you Amy. You are nto a burden, we do understand and best of all we support you. rick - moderator
Richard Faust Community Admin
Hi Amy. I see that others have already commented, but I wanted to also write because I think I bring a perspective that might be useful for you. I am the husband of someone with RA. My wife, Kelly Mack (a contributor here), was diagnosed at two and has used a wheelchair since her late teens. First, I want to say that, while I can only speak for myself, I want to know what Kelly is feeling and needs. I know that I can never truly understand what she goes through, but with information and knowledge I can do my best. I understand your desire to not complain or to be seen as asking too much. Another way of looking at it may be that by discussing your difficulties, you can work together to find the balance that works best for both of you. I know Kelly brings much to our relationship and I'm sure you do too. There may be things she cannot do and that is o.k. There are certainly areas that are not my strong suit. Second, I'd like to say that I understand your frustration when you need to use assistive devices. It is completely natural to want to do the things you always have. Please remember that they are just tools that enable one to do what they want or need to. Kelly wrote here about the difficulty of the decision to use a wheelchair and about how it completely changed her life by allowing her a level of freedom she would never have otherwise: <a href='https://rheumatoidarthritis.net/living/staying-mobile/' target='_blank'>https://rheumatoidarthritis.net/living/staying-mobile/</a>. Finally, I want to thank you so much for your willingness to share. There are certainly others here feeling what you do, but not quite able to put it into words. What you have written may just be what someone else needs to see to know that they are not alone. You also are not alone. Please know that you are always welcome here anytime you need a little extra support or some information. Best, Richard (RheumatoidArthritis.net Team)
christine.laaksonen Community Admin
Oh Amy, my heart goes out to you. This is such a frustrating and emotional state to be in, feeling lonely even with someone right next to you, being vulnerable and having health needs that seem overwhelming. You are not alone here, Amy, our community is here and we understand what you're saying and feeling. Are you able to communicate how you're feeling with your husband? (Or even feel comfortable showing him some of your posts?) Even though it can be scary to be so open, even with the ones we love (especially with the ones we love), sometimes it can be a door that opens up to decreasing those feelings of loneliness. Amy, we're here for you, and want you to know that you are not alone. This community gets you and is here for you. Sending you a very gentle hug. -- Christine (RheumatoidArthritis.net Team Member)
Tamara Haag Moderator & Contributor
It is so lonely to live with pain. It can be lonely to be in pain even when around other people, and of course being alone and having that pain intensifies it. Thanks for reaching out and sharing. Those of us also living with RA do understand how very hard it is to live with the challenges of this disease. I'm rooting for you as you approach each day. Wishing you all the best, Tamara
ra_n37chj Member
I so get that! It's even worse when your husband has a medical issue. What do you do? I feel people think I'm just lazy when in actuality, I am dying inside with constant pain. People also accuse me of picking and choosing things thinking "oh she can do that but not that" when actually it's just some things are easier, some days are easier. It's such a unpredictable disease.
1. Kelly Dabel Community Admin
 Thanks for sharing Patricia. I hope this article was helpful and reminded you that you are not alone in this. You're so right, it is unpredictable, for sure! And you have an added hurdle with your husband's medical issues as well. We appreciate you being part of our community and wish you some relief ahead. Best, Kelly, <a href='http://Rheumatoidarthritis.net' target='_blank'>Rheumatoidarthritis.net</a> Team Member
2. amypollock82 Member
 Unpredictable is exactly right and having to explain that to family, friends or even doctors. I was told from the last rheumatologist that RA doesn’t come and go. It’s constant and doesn’t let up that “good days” don’t exist. I disagree completely I know for certain that I have major ups and downs. I’ve slept this whole last week and couldn’t even be around my kids and today I feel a little better and was able to get food in my house. I just have no idea how tomorrow is going to be.