How does everyone manage with family or friends who just don’t understand this illness?? I don’t have arms and legs missing but can’t walk well so they are not understanding or caring. My husband and daughters are very understanding but my siblings do not. I find it hurtful. Even walking down the street people looking at you with a walking cane and slippers because they are the only shoes I can wear without touching any joints or sore spots. Why are people so judgemental about things they don’t understand.
Hiya Robyn,
I hear you. I have a wonderfully supportive Husband and my kids (who are 9 and 4) have some understanding that on come days Mummy hurts and they have to helpful. However, my sisters.... Don't get me started! One has a little idea of what it is like for me as she had a car accident that left her with a foot that needed to be reconstructed. Long recovery? Yes. Will she get better? Yes. She doesn't seem to grasp that I will not. I will have good days and bad.
The other sister... I wont't even begin to decribe her level of disinterest.
This hurts of course.
But I have come to terms with this somewhat. I know what I can do, I know what is wrong with me. I have learned to ignore the stares of strangers when I use my cane. I figure that I do not know them, they don't know me and I will most likely never see them again in this lifetime. (I also secretly imagine tripping them up with my cane) :)
Please hang in there.
This is a website that I let people read. I does not talk about PsA but it talks about autoimmune arthritist in general. http://www.iaamovement.org/uploads/What_Does_Autoimmune_Arthritis_Feel_Like_web.pdf
My family is starting to understand my limitations but friends. No, to them I look like them. Only a few really understand.
My mother and sisters are making me very sad lately. My husband and son are wonderful but my family of origin, not so much! They not only are not helpful around my PsA they deny it is even happening. I offered to send my mother some information about PsA as she is confusing it with OA and she said no thank you, she is not that interested! I know I should just ignore it but easier said than done. We were planning on seeing them over the holidays but now we are trying to figure a way to politely decline. I am probably not alone, with the holidays coming up I bet a lot of people on here are mourning the behaviors of family and friends in relation to PsA.
Ooh ooh! I know how to decline. Too much fatigue. That's what I was planning to claim even though I happen to be feeling pretty good right now. But my MIL canceled a family holiday celebration, because she is in denial that my 6 yr old's behavior is due to Asperger's, not due to being a brat. Lovely.
Oh how awful. My husband and son are great so I really shouldn't complain but right now I am so hurt by my mother and sister's behavior.....I"ll trade you a mother and 2 sisters for one MIL.......The sad thing is probably your MIL would be wonderful to me and my Mum and sisters would probably be lovely to you......
When my sister in law ( Physical therapist ) freaked out and got worried about my diagnoses my family became involved. She shared a bunch of information from her medical books and my dad and his wife came with me to one of my appointments to learn a little more. My family is wonderful with it. My mil issue is she thinks I’m ruining my life with the biotics and should just take painkillers and move on with my life. Now she believe she has a form of autoimmune arthritis since her hands hurt some times. I would slap some since into her if it wasn’t rude lol. For the most part it’s just how she is and we ignore her.
The fatigue angle is a good one and I’ve used it myself although at the moment it is all too true.
My Aunt never discusses my illness as she believes its all because I am mentally weak! She and my brother wanted to take me on holiday for my 50th birthday, very nice gesture but, she is a bossy overbearing 91 year old and my brother caused me years of unhappiness during my childhood as he abused me for several years. Obviously my aunt is unaware of the abuse issue and although I confronted my brother 4 years ago and he apologised unreservedly and was very repentant. I find it hard to be in his presence for more than a day so I played the card ‘unfortunately I’ve had to use my holiday up during the year to give myself the break when I’m exhausted’ and for this Christmas ‘I’m too tired to host Christmas’. ( I always do the hosting) I do feel guilty but have decided to put myself first and spend Christmas with my 2 sons and my boyfriend…all the people who have supported me, made me laugh and loved me for who I am.
There is the saying. There is none so blind as those who will not see…I think this is so true, some people don’t want to understand.
Hang in there Robyn, we understand as a lot of us have been fighting the same problems x
Just tell family members its time that you start your own Christmas/Holiday tradition, or in the case they are younger, time for them to start their own. If you ABSOLUTLEY have together, have an open house outside of the "witching hours" and meal times. Holidays are tough for any family.
We have 9 kids (adult) 6 of them live in town with their kids. They were in shock when we told them to work out their own Thanksgiving plans this year, I was going pheasant hunting. Wife took about 60 phone calls for recipes (and help) had a great time. The kids did too....
However they will all be over Christmas Eve. pretty simple meal though. Then they all go home....... (Including the three Autistic kids if only they would take the one who lives with us (and only if they were Aspy instead of rocking head knockers......) Its a lot easier for some family members to understand PsA than a meltdown....... I'm lucky all of our kids are adopted and have been exposed to disability/special needs for ever and pitch in. My wifes family on the other hand......
Its hard to stand up to family and friends but its a HUGE part of standing up to the disease. Some get it some don't some will get it and some never will. Its not your problem. Lots of people go through life ignorant. I don't mean to be crass but the old saw that s*** rolls down hill isn't exactly true. Those who produce it invariably wallow in it. IT is us who need to pity them. When one is wallowing in it, everyone smells it.
Leave it to you Lamb to put it succinctly! I am thinking about going away for the holiday as I am so hurt by my mother and sisters I can't imagine pasteing a smile on my face. A trip with son and husband might be just what the doctor ordered! And sending my family a card stating I have donated a goat and chickens through Heifer Project or World Vision in their names. Then no wrapping and I have put something good into the world. I may be on to something.........
Its a great tradition (traveling,) started it years ago when the kids were home. We have fresh reminders of our goats and Chickens on a daily basis. We could gift wrap a box and drop ship........
The gift ideas are an excellent idea and truly do good, I did that for my FIL the year before I left my husband as well as my blood family. Unfortunatey the in laws were not impressed despite being a religious family, Go figure!?
Perhaps that's a clue why they are your ex-in laws :-) (please note I used a smiley)
Louise Hoy said:
The gift ideas are an excellent idea and truly do good, I did that for my FIL the year before I left my husband as well as my blood family. Unfortunatey the in laws were not impressed despite being a religious family, Go figure!?
LOL! Its ok lamb I know and love your sense of humour :). Come to think of it maybe should have given my charming ex-husband those sorts of prezzies years ago!
I love Lamb's humor too! I have my own chickens etc so please don't ship me more sh---. Hey look my picture is finally up! It is of my husband and I in front of Niagra Falls! Sorry to say successfully uploading that picture may be the high light of my no good rotten week........
Well done on the photo upload, nice picture 
I love being able to put a face to a name x
Stoney, my now 15yo son has Asperger's and when he was younger my family REFUSED to believe it was Asperger's and not just my bad parenting. Add that to the PsA and I can tell you it was really hard. I had to really cut back on relationships with family who refused to understand.
Stoney said:
Ooh ooh! I know how to decline. Too much fatigue. That's what I was planning to claim even though I happen to be feeling pretty good right now. But my MIL canceled a family holiday celebration, because she is in denial that my 6 yr old's behavior is due to Asperger's, not due to being a brat. Lovely.
Aspy Kids CAN be brats you know :-) But when we kept track of triggers aside from tattleing and changing the TV from Nick Jr. (or having the nerve of throwing away Paper) I think "family events" were number one. I know its hard (we are still doing it) but its our life, when the next thing happens, we'll have time for more friends and 'family" if they don't have time for us they are missing out.
But I'll share a little secret once you connect the regimental life that makes life with a spectrum kid bearable to the fact the same regime also makes life with PsA bearable (way to many folks take to their recliner waiting to get better) If I did not have to do the "right things" at the "right time" "every time" to avoid the meltdown. I KNOW my PsA would be worse and me a lot less flexible. The cool thing is just how funny these kids are. Their concrete logic just makes you laugh. My grand daughter who is living with us (parents are deceased) our third spectrum kid is legally blind (she has sight) as well as mobility impaired. She doesn't always feel like communicating, but is always entertaining. She is now going to be a professional volley ball player or at least was until the volleyball hit her in the head and the ball had to go to time out for hitting (shes 13)
Marietta said:
Stoney, my now 15yo son has Asperger's and when he was younger my family REFUSED to believe it was Asperger's and not just my bad parenting. Add that to the PsA and I can tell you it was really hard. I had to really cut back on relationships with family who refused to understand.
Stoney said:Ooh ooh! I know how to decline. Too much fatigue. That's what I was planning to claim even though I happen to be feeling pretty good right now. But my MIL canceled a family holiday celebration, because she is in denial that my 6 yr old's behavior is due to Asperger's, not due to being a brat. Lovely.
I think you put it very well sybil and I think you hit the nail on the head. When with some of my family I feel like I am malingering and that is the way they have always seen me. When I had aches and pains my mother would say, "just ignore Mikey she is just looking for attention." But now I realize it was PsA all along. I broke an ankle and a knee in separate falls as a child and now realize a torn tendon caused the falls not because of the falls. Now MRIs help to explain things we did not even have decent x-ray machines back then! And my mother was always grabbing my shoulders and pulling them back and telling me to straighten up! Now MRis have shown the scoliosis and other damage I know why I have always slouched. Or it looks like I am slouching, my spine twists in the center. All they knew when I was born was that one foot was twisted so it was casted soon after delivery. At least until I got gangrene in that foot. On reading this I see lots of reasons for feeling as I do. Thank you, it looks like I have some work to do.....
Lol I love that!! We can’t make people understand I guess, the only will if they want to
Louise said:
Hiya Robyn,
I hear you. I have a wonderfully supportive Husband and my kids (who are 9 and 4) have some understanding that on come days Mummy hurts and they have to helpful. However, my sisters… Don’t get me started! One has a little idea of what it is like for me as she had a car accident that left her with a foot that needed to be reconstructed. Long recovery? Yes. Will she get better? Yes. She doesn’t seem to grasp that I will not. I will have good days and bad.
The other sister… I wont’t even begin to decribe her level of disinterest.
This hurts of course.But I have come to terms with this somewhat. I know what I can do, I know what is wrong with me. I have learned to ignore the stares of strangers when I use my cane. I figure that I do not know them, they don’t know me and I will most likely never see them again in this lifetime. (I also secretly imagine tripping them up with my cane)
Please hang in there.
