I have scleroderma, lupus, osteoarthritis, sero negative arthritis, myelopathy, antiphosphilipid syndrome and a bunch of horrible other stuff. For the last 18 months I have struggled around on painful joints and spent days sitting on benches whilst my family go off and enjoy themselves without me and at times been on my hands and knees in agony trying to keep up with them. I have sat in silence crying on the inside because it is so painful, and not wanting to burden anyone I have soldiered on.
This didn't go unnoticed by my family and they know I have been braving it out, so as a family we decided the best option is for me to get a scooter or wheel chair just for bad days and longer says (I will still paddle around as much as I can for as long as I can). However as a 49 I felt it was such a big decision I decided to speak to my GP for advice. I explained all my issues and unfortunately her response was ‘you're just being lazy’. LAZY!! I have been in bits all day and now feel guilty about getting support. It is hard enough getting people to understand how hard it is to live with an invisible illness and suffering in silence because no one believes you and now I have a GP who hasn't the faintest idea of how tough it is.
I genuinely don't know what to do now, my family are fuming and I feel guilty and self conscious, has anyone else been through this same dilemma and can offer me some advice.
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PickledGinger
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Ignore the stupid GP and get a scooter. Anyone who shouts the "use it or lose it" to someone for whom every step is agony needs a kick.
Some time ago someone went through the same agony and posted on the forum - we told her to get on and get it. She took it to Spain and had a wonderful holiday. She used the scooter to get from the hotel to wherever and then got out and got on with having a ball. Without it she'd have spent the entire time in pain and stuck in her hotel a lot of the time. She went to the beach, discos, sight seeing.
For over a year I have been trying to get OH to get one. He can still walk a fair distance - on the flat, if it isn't hot, cold, windy. A gentle breeze, a slight upwards slope and he's panicking. I don't care that much if HE wants to be stuck - but it impacts on me too. We caught the train up the valley a week or two ago on a glorious day - but there was a wind. He walked to the first available cafe, stopped and refused to go further. So I had to too. If he had a scooter we could shop without getting the car out - I'd walk there for small things, he can't. It works two ways.
Thank you so much, I have felt like trash all day because of her attitude,I felt like it was all my fault and it had taken me months to come to this decision only for her to call me lazy (this was my new GP & it was our very first conversation), she doesn’t even know me. She said she didn’t even know if there was a referral service like OH and said Its down to me to sort. Don’t they realise how difficult it is just getting up & dressed in the morning. Anyway I will press on and go to the mobility place tomorrow, I cant go on like this but it would help if the GP knew our conditions better. Thank you again, my family will be happy now.
I would put in a complaint to the practice. New she may be - but that is no excuse for being rude to a patient with a chronic illness who is seeking help. Ask to see the practice manager or senior partner. Tell them that you refuse to see or even speak to her again until she has at least accounted for her attitude and justified being rude (that might need some mental gymnastics ) and preferably apologised.
And she SHOULD know - even if the answer is "I'm afraid not".
Get whatever you need in order to improve your quality of life, ignore your GP and resist the temptation to run over their foot accidentally should you meet them.
I am outraged at your GP! First of all I also suggest you need to find a new GP. Her attitude was totally dismmissive. She sounds like she needs to get further training. I totally understand what you are saying. I like you have lupus and further add-ons now leaving me with extremely limited mobility. It is difficult isn't it. I totally agree with PMRpro go ahead and get a mobility scooter or similar to suit your needs. Do not feel guilty or self conscious. I have got to the stage (after 10 years) of similar to do what helps me to improve my life. I am sorry you had such a bad experience x
You need a new GP stat! Even if they see the light and change, your patient-physician relationship is ruined. The trust is gone after this. What she said is very hurtful. You are not lazy. You are suffering. And a good GP would send you to physical therapy for limited ability and scooter evaluation.
You are not alone. We are here for you! I hope you find someone who will listen. ❤️
I got a mobility scooter several years ago and I very seldom use it but when I do it's my tool to enable me and my family to do things others take for granted. It's often down to choices - do I walk all the way there and then need to come straight back or get a taxi .
OR do I scooter there, park up and use the energy and pain management thus saved to walk around with the rest knowing I will be sitting going back. I get even close friends making stupid on better days with comments like oh I thought you used a stick or why aren't you using your scooter. I explain I keep them to use as a tool when needed.
You have to let stupid ignorant comments including from GPs to just run off and not stick to you.
Get out there on it when needed, use it with a smile it shows you are getting on with life and using the tools available. Just don't use it when the exercise although hard might be best to do. Remember it's YOUR tool and you will learn when to use. Go for it
That is totally unprofessional n BANG OUT OF ORDER!!! My heart goes out to u PG!!
I'm in a similar situation to u..I can mobilise sometimes but when I'm out it would take us forever to get anywhere if I'm trying to walk.
It took me a long time to accept that I might have to have help..the stick just wasn't doing the job so I reluctantly approached my GP ( she's fabulous) n asked about getting a wheelchair.
She referred me to the occupational therapy services n I now have a brand new chair that they will repair n replace in five years..it's not mine per say..but it's free n it's made my life considerably easier!!
My advice would be to see another GP in your practise..they only have to refer u..the occupational therapist will do an assessment with u..n then hopefully you'll get some wheels!! Occupational therapists r lovely..I've had assessments on two occasions n both ladies were extremely helpful!! Xx
If you need a scooter, then do get one I have used one for over 10 years now, and quite simply going out without it is not an option, Make sure you buy one suitable for all your needs, go to, or get one to come to you, a mobility dealer and try before you buy. The world is out there to enjoy, who cares who is watching!! Good luck xx
Just a quick thought - if your GP had the flu, aching, fatigued, low fever, miserable ....would he/she be considered lazy because they didn’t feel like getting out of bed, didn’t feel like walking long distances? Would they feel exhausted and and frustrated because that darned flu wouldn’t go away?
We live with this crap day and night and push ourselves to get out of bed and live! Get a new GP!
Horrible to say but as a physician, I thought myself lazy for the longest time not knowing I probably had lupus. Thought I was losing my motivation. I was always tired. My colleagues definitely knew I wasn’t well. I lived in denial. Doctors are hard enough on themselves. They would work through the flu if they had to because finding coverage is near impossible as we are already spread so thinly. Eg I knew a doc who wore a diaper to work because he had C. diff. Just to give perspective. Not safe but you’re not allowed to bail.
This GP is probably young with no life experience. She doesn’t know any better. A good physician relies on experience as his/her career develops. Over time and with many lessons through patients like ourselves, she will learn to hone better bedside manner and diagnostic skills.
With that being said, being way off base and hurtful to PG means that the GP is certainly not ready to care for patients with chronic illnesses. Physicians are trained to churn out numbers and make money these days. I’d estimate I get one great physician for every 5 I visit. Most of the time they are the eldest of my providers. If young, I give them mucho kudos for their efforts. Hopefully this reinforces good bedside manner habits.
Thank you for this! I feel a little “mama bearish” when people walk away feeling this way.
I think for me my bigger point was that when you see someone with the flu or cancer you would never see that person as lazy. This is just a tender point to me. My Dr encouraged yoga or anything that will get me exercise but her experience as a Dr changes how I feel about her “encouragement “. If she said I was lazy, I would most likely consider someone else. We fight sometimes an invisible battle and you expect a Dr to understand this.
Your points are well taken though and I appreciate them.
Lupus is most certainly half physical and half a mental battle. Here is a letter I received from a GP even after having been diagnosed with lupus. I just wanted someone to help coordinate care. Trust me I get it and even as a physician, I have been met with the same barriers. This letter was emailed to me and not even deserved of a phone call apparently:
I have had the opportunity to review your entire electronic medical record, reviewing all blood tests, imaging, progress notes, ER visits, and consultant notes. It is my professional opinion that you do not have a chronic medical illness. You do not meet the criteria for Lupus or any other disease at this time. It is my opinion, although I am not a psychiatrist, that you meet the criteria for Somatic Symptom Disorder and perhaps another psychiatric diagnosis such as an anxiety disorder, mood disorder, or certain personality traits.
I would recommend that you consult with a psychiatrist for a more comprehensive and definitive diagnosis. However the treatment of somatic symptom disorder is to have a strong primary care physician with whom you would have a trusting relationship who minimizes testing and specialist visits. I do believe that your symptoms are very real for you and cause distress, however the treatment is not continued intervention on the part of medical specialists, the emergency room and further testing.
I am not certain whether you are willing to accept this diagnosis at this time. If you are, I think you will improve over time. My recommendation is that you do your best to re-start your fellowship and work closely with a PCP and a psychiatrist.
This lady is a nut job. So I went back to my old PCP. She even called my rheumatologist who was quite angry with her assessment. What can I say? Not all doctors are equal. Some are better than others. Let the bad take care of the bread and butter patients. Leave us loopies to the more experienced.
And as a follow up. I did see a psychiatrist formally. He was appalled by her and my bosses response. Said I needed more time off work and was coping well given my situation. He did not think I’d benefit from an antidepressant or further counseling. I was released from his care the same day. When docs treat you poorly, it lies in their own insecurities.
My new but now former Rheumatologist saw me for 3 visits for a total of 30 minutes. Took my labs and proudly declared that she didn’t see any Lupus. Now, I’ve already gone through 20 plus years of treatment and diagnosis so it didn’t discourage me but I was so disgusted that I had to fight not walking out. I needed my plaquenil!
Then she looked at me and said “ you know, it is a good thing to not have Lupus” with a look and tone that said “she’s one of those who WANTS a Lupus diagnosis”. I was so mad for all of those patients that are desperate for help who go in, get a quick look and then are dismissed. They will spend years trying to find answers and I find that very sad.
Hi Pickled Ginger. It amazes me sometimes why some GPs and consultants lack empathy with the people who rely on them for support. They seem to forget who's NI payments over the years provide their salaries. Having had a similar experience with my consultant I can well imagine how the comment made you feel, but please don't waste your energy by taking them seriously . You and your family know how much you're suffering and they're the ones who will provide you with the emotional support you need along with the wonderful people on this site. So go get your scooter and do whatever it takes to make your life as pain free as possible. Best of luck for the future.
Hello PickledGinger. I’m a bit late to this party but felt the need to respond.
I don’t have lupus but pop in here from time to time as a very good friend lives with lupus and I hope by being better informed about the challenges of lupus I can understand what its like for her. I do however live with other chronic conditions ( PMR, heart failure and this year diagnosed with pulmonary hypertension) which have a big impact on my mobility.
Life would be even more difficult and limited without my mobility scooters. Yes I Have 2!! The first one I chose is rugged and has suspension and can cope with gravel driveway and grassy and uneven terrain. It comes apart into 5 pieces and can fit in the boot of an ordinary car like that. Number 2 scooter is more compact and folds itself up using a remote control key fob. Has a lithium battery so not so heavy. Bought it initially to get to hospital appointments in London which meant going by train. London taxi drivers were fascinated by it and they didn’t need to get the ramp out……… It is also fine for shopping trips and also those endless hospital corridors.
Using a scooter has given me a measure of independence too. I live in a village with good facilities and can get to the library, hairdresser, bank, supermarket, gp surgery and local coffee shops etc to meet with friends. I consider this really important for my mental wellbeing that I can plan an outing and be out in the fresh air ( topping up my vitamin D too) and support the local shops at the same time. I have a panier bag on the back of the scooter so can carry a bit of shopping or library books home if required. I have to think about how I dress in the winter as I find my knees get really cold as I’m sitting still and not generating any heat by not walking. Last year I discovered that wearing leggings under looser trousers helped a lot.
As well as my own scooters, I have borrowed and hired scooters at various places. Just last week whilst having a short break in the Cotswolds I booked a scooter to use at Westonbirt Arboretum. It was fantastic. I was able to go on the aerial walkway using it. I had never imagined being up in the tree canopy on a mobility scooter! Previously I’ve also used one at RSPB reserves and last Christmas booked one at Sutton Bank National Park Centre in the North Yorkshire Moors where the tramper scooter enabled me to join the family and enjoy a Boxing Day walk on a crisp cold sunny day where we could see for miles. Exhilarating! The hired scooters do tend to be deluxe with proper suspension, high back support and chunky tyres so you don’t feel the bumps so much. I am so grateful that these charities invest in these scooters for those of us with mobility problems and try to give a donation to help with the upkeep and maintenance of them. Accessibility is improving gradually. And there is a website called walks with wheelchairs ( sorry I don’t know how to post a link here) as well as National Trust and some other charities who have information..worth googling what might be possible in your locality.
From your latest post and the posts of other members it sounds like you have decided to go ahead with a scooter. It was one of the best decisions I ever made. My husband and I can still have days out on our own or with our grandchildren in the school holidays.
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