Coaching for chronic illness

[Bobbydoodle]

Has anyone had coaching and think it helped?

I’ve got the option of having some coaching to help me with anxiety and pacing and accepting my health conditions etc. I just wondered if anyone had a good or bad experience and what it was like?

[Spanielmadlady]

Hi Bobby. Years ago when I first became unwell with breathing issues I had counciling through respiratory rehab .(It was pre lupus diagnosis) it helped me come to terms with my illness and develope coping strategies. Like all forms of help offered it can be useful if you embrace it and approach it with an open mind . Kind regards SML x

[Bobbydoodle in reply to Spanielmadlady]

Thank you ☺️ do you mind me asking what type of coping strategies?

[Spanielmadlady in reply to Bobbydoodle]

It's all individual but for me it was breathing ,distraction,relaxation and mindfulness techniques. Acceptance plays a big part x

[Sun19shine in reply to Spanielmadlady]

Hi I had a few appointments with an occupational therapist when I was first diagnosed with lupus 6 years ago

I found it really helpful as I was struggling to accept what had happened to me health wise

It was good to speak to someone totally independent instead of family & friends

Hope it goes well for you

[HealthCoachLupus]

Coaching could be very beneficial! However, I am biased as I'm a Health Coach myself 😋 Just like anything, it's all about the person - some a good, some are bad. It's always good to have a free consultation with them first to see if you both gel. That's what I do with all of my health coaching clients.

[Bobbydoodle in reply to HealthCoachLupus]

Do you mind me asking what exactly a health coach does? I feel nervous to try it for some reason and can't see how it can help in the sense that the doctors have done all they can so how can a coach help?

[HealthCoachLupus in reply to Bobbydoodle]

A Health Coach will be like a very supportive friend to help you on your health journey.

They cover all aspects of health: mindset, nutrition, physical activity, sleep, stress management, etc.

They will work with you to Co-create an action plan that's individual to you. It's not a case of "eat healthier and move more" - they will try to find what's best for you.

It won't be anything like a doctor's appointment. A Health Coach doesn't claim to treat disease, they just help you manage everything that you're going through. They will take some of the burden off of your shoulders 😀

[Bobbydoodle]

Ahh thank that is a really helpful reply

[ijeasike]

I have not tried coaching, but I have used counselling for the same purpose to help accept my condition. Coaching and counselling can be very benefical in accepting and Psychologically managing chronic illness. Give it a try and see how it works for you.

[Bobbydoodle in reply to ijeasike]

Thank you ☺️

[Lizzo32]

Hi,

Thanks for posting!

Personally I find it frustrating and even pointless talking to others about lupus to health professionals UNLESS they’ve had training in AI diseases, are highly intelligent and knowledgeable about the complexities of the immune system. Most don’t want to know or simply fake attention! BTW I come from a family full of doctors. Hopeless.

This forum is truly wise and informative! Better than any locum, p/t GP.

GOOD Luck!

[Bobbydoodle in reply to Lizzo32]

Thank you ☺️ its definitely hard to find people who truly understand isnt it.

[dg70]

I to have had regular Occupational Therapy video calls for free for the last year which have helped a lot. They can help with practical things like equipment for work to make life easier to coping with fatigue. Mine also just listens to the myriad of things that keep happening with Lupus and she often sends me links to things which may help me. She is a dedicated Rheumatology occupational therapist so that helps a lot. She also talks to others with autoimmune conditions and relates how others have navigated similar situations as myself.

Any help you can get to help you cope and get on with life all the hurdles you come across is a good thing. Hopefully you won't have to spend money on this help and check they fully know autoimmune conditions and how this can affect people and listen to how it personally affects you. Beware of ones who think you 'can get over it with willpower or try and cure you or also might say half the things you experience are in your head, that would do more harm than good.

I hope all goes well, you can give it go and see if it's for you, you have nothing to loose. There are also brilliant Lupus UK regional groups where you can connect with others, check symptoms, listen to health professionals give presentations. It's invaluable.

[Bobbydoodle in reply to dg70]

Thank you ☺️ that sounds like a good service where you got the occupational therapy calls, I'm pleased to hear they helped you.

[dg70 in reply to Bobbydoodle]

I am just lucky it's a Lupus Centre of Excellence so they have to keep meeting the standards to be one. Hope you get on ok.

[nascar4433]

I found it very difficult to deal with the diagnosis of an AI disease (I have Pulmonary Sarcoidosis), because at first you rather feel like ...why's my very own body betraying me? Of course it's not, but since it's not an outside attacker but from within, that's how I felt. I've since been diagnosed with CHF, CKD, Lymphocytic Esophagitis, and many orthopedic issues & surgeries. Once I came to grips with the AI diagnosis, got treatment, and started managing it, I was able to better accept it and deal with it...for me, it was through prayer and a few really good friends. I try not to feel the "why me" any more when receiving new and life-changing diagnoses, and come to grips with them by learning as much about them as possible, and again, prayer. I kind of take the attitude that I'm not singularly special, and that multitudes of people are receiving devastating diagnoses every day that forces them to endure terrible treatments & side-effects, and are life-threatening, like cancer or ALS. Mine are all chronic, and not life-threatening in the short term. That's not to say they aren't damaging, uncomfortable, etc. When I start feeling "why me?" I try to turn to my faith for comfort and strength. And, after all, why NOT me? I'm blessed to have very good, knowledgeable, well-trained, and nice specialists that I trust...that makes a world of difference. It's also difficult to handle alone...most of my friends don't have rare diseases and have no comprehension of what it means to look ok but be hurting 24/7 and suffering the effects of unseen diseases. I'm actually glad they can't understand because they've never received rare diagnoses...I wouldn't wish my body in anyone. Fortunately I had a cousin with POTS and other serious AI diseases, and she understood. Unfortunately she passed away at 43. But we knew how it was, and we joked about how we always answer the question "how are you?" by saying okay or good. Why? Because they wouldn't understand if you told them, and most don't really want to hear details...it makes them feel better if you just say I'm ok. So chronic illnesses that aren't visible can tend to make you feel very alone at times. But again, I think of those who may be receiving a cancer diagnosis, and I try to turn my mindset around. I do wish you the very best as you navigate your AI, and I hope you find very good doctors that you trust. It's a very important part of our healthcare. Don't be afraid to find someone else if you're not satisfied with your docs. If you feel they aren't listening to you or taking you seriously, then I would seek someone new. It sounds like perhaps you need to find new specialists if you feel like they're dismissing your symptoms. I'm fortunate to have good ones I trust...I tell them all of my symptoms...they want me to...so they can determine if it's something related to their field. How can they figure out the puzzle if they don't have all of the pieces. I had a wonderful doctor who told me that long ago...he said if I would tell him every symptom, regardless of how I significant I thought it might be, then he could fit it together and see the bigger picture. After all, I didn't go to medical school, he did! I've never sought professional coaching, etc., but it might be useful to you. I've considered it when things get to be too much...too many symptoms, too many rare diagnoses, too much pain, whatever. Perhaps it would be beneficial and I should seek guidance. Guess that's an individual choice. I tend to be an introvert and think I can manage. Perhaps that's naive. Good luck to you.🙏🙏

[Bobbydoodle in reply to nascar4433]

Thank you ☺️ I am sorry you have to struggle with your health but your mindset sounds really healthy which I am sure must help when everything else can be so out of your control.