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Living with Psoriatic Arthritis (PsA)

How do others cope with the disbelievers!


#1

It is a comfort to know there are other people around on this forum who understand the extreme fatigue and the frustration of looking well but feeling dreadful that PsA often brings with it. I’m not someone who usually broadcasts to others my own health issues and when asked how you are I usually reply fine thanks. However, whilst out the other day someone I know not to well but saw the other day said to me “oh how are you I heard you have not been very well” I replied “no unfortunately I have not felt great” so she then said “well you certainly look well most people who are unwell look drawn and haggard but you look the picture of health” I don’t want sympathy as such but the way she said and the tone of voice she used made me feel she thought there was nothing wrong and it was all a fuss I was making. I struggle on and don’t tell people I’m not well usually, not many people know, as like you I expect you hide it well. I just replied, it’s the high dose of steroids I’m having to take that make me look like I’m blooming and left her to it. It’s times like that though you feel like crying because all you want is to feel well again and to do just what you have always been able to. It is hurtful though when you suffer in silence and make such an effort to keep going and appear normal to the outside world and then you get comments that imply you are making a fuss about nothing and there’s nothing wrong with you. They don’t see you struggling around the house for 2 hours every morning and flaked out after 10 mins of trying to weed the garden or get the dinner! I had made a huge effort that day to get out and was feeling pretty exhausted it was an effort to stand and talk to her for a few minutes so I suppose I was feeling ultra sensitive. I must admit though I hate mentioning to people that I don’t feel great because I do look so well and normal on the outside, but the exhaustion and the aches and pains are screaming inside my body. I am beginning to think everyone must think the same what’s she fussing “We all get aches and pains when we are in our 50’s it’s to be expected”I often get remarks similar to that.
Let me know I’m not alone!


#2

Ugh… you are not alone at all.

I said “not so well, it’s been hard to do much exercise” to a “friend” who I had given a reasonable amount of info on how PsA works, and they responded with “oh, you’ll be fine, you just need more sunshine! Have you tried green tea?”

I said, “not as well as I’d like to be, my tummy’s been playing up” to a “friend” who knows I have inflammatory bowel disease, which is life changing - details different to PsA, but the level of life changing the same… and her response was “well you look great, I wish I could be as skinny as you!” (Of course, I couldn’t exercise because of the PsA, I was skinny from malnourishment from the IBD… :roll_eyes:)

And occasionally, to even get the sniping “I wish I could lie around all day Sunday” from friends, when you have been pushing yourself to do a whole day of work each day, in tears by 7pm from exhaustion and pain, and feeling like you are a failure for not being present for your kids…

And then, to have my husband constantly say that I was well enough to do what I wanted, but too lazy to do the things that were important to him…

When in reality, I never did what I wanted (going horse riding or for a walk along the beach, or perhaps to the markets), but instead put every ounce of energy into doing the best I could for what he wanted - packing for his camping trips, going out to dinner because he wanted to, driving an extra 20mins over my 1hour commute to get the steak he wanted so he wouldn’t sulk… and just generally organising his life.

So, the thing I learnt, was to keep the friends in my life who didnt judge, even if they didn’t really understand, but ditch the ones who actively blamed me for my illness (both the friends, and the husband in the examples above, are now ex).

Then, with acquaintances, I either say nothing, or, I respond like you did. And that’s fair. But I also acknowledge that it’s not unreasonable for them to respond the way they did to you - total lack of empathy - but then, they don’t have the back story. So, as I see it, it’s really ok for them to respond that way, but also, particularly when things are hard, it’s also ok for me to cry into my ice cream over it. And, if it’s a good friend, to tell them their behaviour is just not good enough.

For me, the important thing is that “this too will pass”. Life is impermanent, and thankfully, good treatment is often around the corner.


#3

:rofl::rofl: your message made me smile and chuckle, always a good thing even if we are laughing at ourselves. What you say is so true and the way it is for so many of us I am sure. In all honesty I have to admit, the total exhaustion and often invisible pain is hidden so well from others because that’s what we have to do to get through the day as best we can and to do all that we do, that other people have actually no insight at all into what we are actually going through. To them we are just tired and aching a bit and just making a fuss about it. The total exhaustion is indescribable and I don’t think unless you have suffered it you can imagine at all what it is like. I’m sure I have been guilty of jollying people along when they have had what appears to be a little moan about something. I have to admit even having been a nurse for 30 years I hadn’t realise what extreme exhaustion can be like, and have probably thought more than once or twice in my career, I’m sure they could do more if they just made the effort, not realising how debilitating “being tired” can be.


#4

Sometimes I wonder if people just don’t understand when you explain it to them, or they just don’t care. I hope they don’t understand.

I have struggled with work for the last year, having bad days when I just can’t go in. Now, they have relocated my office and there is no handicap parking, so I have to be there by 6:30 to be able to park close enough I can walk. I have complained, but it falls on deaf ears.

One good things it hey fired my old director and I have one now that sees the way I struggle some days. She is much more understanding and is working on be being able to work from home on bad days. I’m happy to have her now.

I’ve sort of given up on how the people I know feel about how I am struggling. It’s unfortunate that if you are not crying out in pain or not in a wheelchair they don’t think you have a problem. I work with a bunch of younger people now because all the others I did work with have retired. Now that I am 60, I think they just think I am old and that is the problem.

My new director is younger, but I think she understands. The work I do is fairly complex and she knows it would be hard to find someone else to do it. She has asked me a few times if I planned on retiring because of the PsA, I have told her not as long as I can work. She has worked to cut out some of the traveling I had to do and is focusing my responsibilities more on administrative work that no one else wants to do anyway. I think she is going to be a gift because I was seriously considering taking disability after the first of the year.

It’s nice to have someone on my side that understands.

I’ll just keep plugging along as long as I can.

I did start the Cosentyx two days ago, I am keeping my fingers crossed.


#5

Hi Tamac, I’m so pleased you have now got someone that sounds as though they appreciate you and acknowledges your daily struggles and is on your side so to speak. That is the way it should be, and it is amazing what a difference it can make just to know that you are valued and it is appreciated that you do have to battle against daily difficulties to achieve what you do. It’s not about wanting people to feel sorry for you or give you loads of sympathy it is just the acknowledgement and being given any help possible that would make things easier that helps. I do hope the new drug brings you relief, I look forward to hearing the improvements it brings you. All the best Anne


#6

My Mom tells me that I wouldn’t be sick if I would stop taking all those medications! I have given up on trying to convince people of my chronic fatigue, I just slip off and have a nap!
Even though I explain to my supervisor what my disease is, the other day I said I did not feel well, he asked “are you sick”, I just looked at him, disbelieving…
I am at a retreat, they wanted to put me at the front desk answering the phone, just the thought of sitting someplace for 4 hours, gave me the fear of, what happens if I start getting chronic fatigue and no one is there to relieve me? I told them I can be a back-up for the others, so then i would not have the stress to try and show up at 8:30am after being sleepless all night…
I think some of my associates feel I am just faking it, I tell them that it is kind of a expensive rouse, $50,000 a year…


#7

Dear Jon, As you say all the tablets and the $50,000 lighter all for the fun of it, we can laugh amongst ourselves about it, you have to, it just proves how little insight people have as outsiders. It is the same for everyone I fear who have symptoms that are invisible to the naked eye. It has certainly opened my eyes to the silent suffering of many and I have to admit to maybe readjust my own thoughts of others who I may previously have been guilty of thinking, I’m sure they are just a bit of a moaner and playing on the aches and pains we all got as we get older! Good luck Jon and I hope your aches and pains, farigue and all the rest that comes with it improves…Anne


#8

You ARE NOT ALONE! I could have repeated your entire remarks, as I’m sure everyone here would echo them!
It’s amazing how insensitive people are—maybe it just makes them uncomfortable and they don’t know what to say. I’ve had people look with horror at my psoriasis when it flares (my mom, sister—I keep it covered so other people don’t see it), but if I say anything about my aches and pains, I almost feel silly because I don’t look sick and I am able to do things (mainly because of Enbrel—I have no clue where I’d be right now if a biologic wasn’t working for me!)
But you hit the nail right on the head! Hang in there—everyone here understands!


#9

@Jon_sparky, same here! When I said I was starting P.T. again for my feet and back, my supervisor asked “what’s wrong now?” Really??? My husband will ask that, too, even though I’m very sympathetic about his aches and pains!
My supervisor goes to a chiropractor for her neck since a car accident. I sure don’t ask her why she has to go to a chiropractor. Duh!
It’s just SO annoying. Inflammatory arthritis is one of those diseases that don’t get much concern from people unless they have it themselves…I always say the 3 “A” diseases: Arthritis, Asthma, Allergies, don’t get the attention they deserve considering how debilitating they can be!


#10

It takes some time as I remember I started w one injection a week for one month and then once a month.
Effects come gradually if remember correctly


#11

Sorry reply above concerned effects of the Cosentyx. It is so important to read your comments, makes one feel less like someone from another planet.


#12

LOL, nope, not alone at all! My favourite was the colleague who was asking why I was on a mobility scooter. I explained, and he got a look of recognition on his face. “Oh,” he said, “I know exactly what you mean.” And then confided in me, “I have arthritis in my little toe and that sucker has ruined my golf swing.”

That’s just the way it is. Try not to let it make you crazy.


#13

Your response made me smile, oh don’t we all wish it was just our big toe and our golf swing that was affected :rofl::joy::rofl:. I could live quite happily with my golf swing being ruined…never played golf in my life so I wouldn’t be bothered by that!


#14

If I did a golf swing it would very likely ruin my little toe. As well as the skulls of bystanders.


#15

Hey y’all.
My problem is disbelieving family members and in laws, especially the mother in law. She’s 71 and thinks she knows everything about everything literally. She doesn’t even believe I’m allergic to metal because my reaction isn’t like her reaction was. And of course she has arthritis too. And trying to explain to her that what I have is different from what she has is useless. She says yeah, yeah I know I know, whatever you say. UGH!!! How do you get someone like that to understand???

Other family, like our children try to understand but I don’t want to upset them or make them worry so I down play the seriousness. But I know they’re smarter than that. Lately they seem to no longer think I’m just being lazy. They’ve witnessed the severity of fatigue I have. Like yesterday our oldest son and his family were here. I fell asleep on the couch for about two hours. I just couldn’t stay awake. Our oldest granddaughter, Madelyn, kept talking to me and even laid down with me for a while on the couch. She asked me “Nanny you’re tired?” I said yes Maddie, very tired. She said I’ll lay down with you so you can get a nap then. And she did. I really hate that I don’t have the energy to play with her like she wants but touches my heart that she’s not even 4 years old yet and seems to understand better than most adults.


#16

If you look at your hand you will see five finger (well you should see five fingers unless you had an accident or lost an argument with a table saw recently) One right there in the middle is for dealing with the disbelievers (its in the user manual) Use it often and use it well. It is simply the best way to deal with them. Arthritis is no different than erectile dysfunction or menstruation. Its your problem no one else’s and no one really understands or cares unless they have the problem. What they do understand is how it effects them. Not so long ago I had three daughters, and two granddaughters living with me in addition to wife going through the change. The only male companion I had in the house was my cat. He sung once two often and they had him neutered. I heard all of their issues. But no asked ME about how it effected me. (Guys, you can relate - there is a reason we spend most of our time in the garage besides the beer fridge)

If someone doesn’t, won’t, can’t understand - use the middle finger and charge your mobility scooter and enjoy what you can… It’ll drive you crazy otherwise.

How do I cope? With liberal use of “the finger” I don’t need to. Funny thing when I quit caring I discovered a whole lot of people who did. I also discovered they ALL had a cross to bear.


#17

@tntlamb.:rofl::joy::rofl::blush: your post did make me laugh, thanks. I haven’t read the manual I really must do, I might find lots of useful snippets like that to get me through the day. I can’t imagine being surrounded by so many females and being the only male. Even though I’m a female I do have great sympathy, I’m amazed you survived as well as you obviously did. I do still have a middle finger and every time I feel frustrated with the lack of understanding of others I will think of your advice and remember there is a huge big family here who all understand.
…Anne :grinning:


#18

It used to be the other way round for me. Only one male at home these days but these things damage you for life. The (female) cat isn’t any use, she thinks she’s superior to everything that breathes.

And this is so true. Some people do care, they do pick up on things, they do remember what condition I have and understand a little about how it affects me. And those who don’t … well sometimes it’s ignorance, the type of ignorance and arrogance I had when I considered myself healthy. And again, these days I’ve finally twigged that most people past the age of 10 are dealing with something difficult in their lives that nobody else can really understand.


#19

So true Sybil. For many of us, especially initially, the shock of this diagnosis is horrid. The day to day reality even worse, sometimes. A little later it becomes more relative. That takes time though, just lots of time.

However being together with someone who doesn’t get how all of the above shook you to the core, is really hard. I’ve got a partner who does try and help with the more practical stuff - sometimes. He certainly though disappears when I’m in ‘falling apart’ emotionally.

But over these past 3 years or so, I’m learning he actually does his best. It’s not the best I want or even sometimes need, but it’s his best. Sometimes I must just wallow alone without demanding his understanding or attention.


#20

@Sybil and @Poo_therapy I totally concur with what you say, there are so very many people out there who we meet in our lives who have their own mental or physical struggle that we have no clue about. My husband is excellent on a practical support side and silently just gets on with the jobs I struggle with at the moment. I’m just so frustrated I can’t do them myself. Emotional support he is not so good at I must admit, he tends to bury his head in a book and say look your not well, you just need to rest, when all I really need and want is a understanding cuddle. I guess we can’t have it all and I just have to remind myself I know he cares by his actions, helping practically wherever he can and he just doesn’t do emotional and that’s because that’s him and just how he is. I just appreciate how lucky I am that he is so understanding and so helpful in a practical way.