Sticky Blood-Hughes Syndrome Support
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Do we have to look sick to be sick??!!??

Yesterday I saw a cardiologist for the first time. Am having some other problems not related to APS and he was going through my entire health history. He made the comment that I looked 'too good' to have "a serious case of APS". He said that, in his experience, most people with APS looked very sick.

Now, I've had a stroke, more tia's than can count, my skin is mottled, 1 miscarriage, ETC., and that is not healthy. I am asking you others out there, honestly, do you all look sick? I'm not trying to be difficult nor funny here but feel I was being put off by this doctor, that my APS was not being taken seriously.

Am having surgery in 10 days for a cancerous tumor which must be removed; they are taking that very seriously. But it seems this APS is not being taken seriously, nor has it ever been.

From Curious Leigh in the States...

19 Replies

Hello,...sorry to hear about your two sets of sounds as if the knowledge of APS is very scanty here and rather judgemental. My own husband likes to joke about how unseriously I have been taken over the years. APS multiple clots in legs, first pregnancy, AND some narrow escapes in teenage years and to date, prior to commencement of fragmin during pregnancy and also daily aspirin. I also have SLE Lupus, sjogrens, posriatic arthropathy and hypothyroidism

. Now on a good day I can look much younger and quite good.... but when ill there is no intermediate setting! However due to only having had recent diagnosis of all five things... I have felt truly awful since teenage years! Nobody listened... however due to my quest to try and be well like other people when not laid up with mystery and at times life threatening illness - I did the following. Exercise daily where possible. Being outside daily, wherever possible.

On to of this a fantastic diet.... always steamed veg or salad with every meal, fruits, no ready meals... all free range meat or nice fish etc..nuts, seeds... you name it I do it.

On top of this, years back. as it was so clear that I had something making me flare up... beyond daily avocadoes and super foods.. I have taken omega fish oil caps, flaxseed oil caps. lysine, ester c (gallons of green tea), turmeric caps, Q10, b complex.. also glucosamine. plus regular water.

For my skin, lots of aloe vera gel and neat olive oil etc. So this regime for 32 years has probably protected me somewhat... just as well as I have such severe allergy to drugs which should help my systemic lupus and other things.

This has probably made me look better and helped in general... but I can look very very well!

End result... at times not taken seriously until I am deep into a very nasty infection or episode.

I have everything written down to date... but like you feel the frustration. I recently had a severe allergy to plaquenil... I lost all my skin, swelled up like a balloon, and had to lie in bed doing my own research... as when I phoned the local locum to ask about my extreme kidney pain... (quite clear they were inflamed), she had prescribed steriods.... I was asked if I had a urine infection over the phone... So... yes this can happen. Try not to let it get to you, and if you are not listened to correctly take somebody you trust along to the appointments with you, to help reinforce your points of view.

Please feel free to download some of the useful papers from the Hughes Syndrome Foundation website... I have for all involved with my care, (apart from Professor H of course), but also my children's paediatrician... as my daughter had the same reaction, and it has taken years to get her hughes and lupus taken seriously!

Best wishes to you. Mary F x

Having written all this, by the way... I now have a dreadful urge to purchase a lorry load of chocolate!


Hi Mary,

I always end with a smile after reading something you've written. ;-)

Yes, I can also look sick at times. And do remember what you went through not too long ago. But, like you, I am a health food person. Except my fatigue is so overwhelming at night I don't always prepare all the fresh salads/veggies, etc., which are so important. Do my best and do take all the supplements you mention, plus more.

Also was dxd. with MS 7 years ago and spent 2 years in wheelchair before it mysteriously went away (yes, I know auto-immune can mimmick ms and evidently did so in my case). Also have sicca, trigeminal neuralgia, migraines, a seizure disorder, on and on. But attitude kicks much and I've got that in surplus. So the doctors I take with a grain of salt, but also post about it here because that what we are also about. And that's what I love about this site.... we can share yet know it is still professional.

Anyway, as your day winds down mine is beginning. Tomorrow I have to go and have a stress treadmill test. Am kind of dreading it as it is beyond me physically. Used to be so active but they will be asking me to do something I've not done in many years. Do they WANT me to have a heart attack? ??!! Heck and all, we shall see. I'm being a bit humorous here, or giving it my best. Maybe I'll go and purchase a lorry load of chocolates today!!


You look after yourself... it is your life, your body and YOU know best. Mary F x


I find the lack of outwardly symptoms both a blessing and a curse.

When I'm at work and I don't want anyone to know the extent of my condition (I really don't want them to consider I'm unable to do something- I know my limits, I don't need anyone else to) it's great, the kids don't know and are far more interested in who my boyfriend is! But, I suppose when I'm feeling really crappy and I stare at the walls waiting for my brain to reboot, my family and friends are unaware, though they have started to recognise the vacant expression and are now very understanding.

In terms of my GP, I seem to have to tell them about the APS whenever I visit. They have a worse memory than me!



PS- MaryF- you should write a book! Or start a Channel 4 TV series!


I doubt I could behave long enough! x


Hi Tan,

I so agree! At times it feels good to be told, "Well, you sure don't look sick". But when my doctors tell me that.... it doesn't help because they aren't really believing what is happening. A real catch 22.

Amazing that a doctor can't remember about your APS. Sigh. !!!

What do they teach these physicians in medical school, anyway???



Hi Leigha- sounds to me your cardio dc needs some up dating on APS- do you have a rheumatologist ? or maybe a hematologist ? as Mary says arm yourself with the info available on this and other sites. and show them __------- jet


Hi Jet....

How right you are. No to the rheumatologist, yes to the hematologist. And I am wearing a suit of armor, heck, have studied enough to have my pH.D.. ..... But, laugh, sometimes all the tia's and stroke does play its tricks, you know, (or some of you may know) and so I go with my little trusty notebook.

Bottom line, a lot of the doctors don't want to be shown, you know? Their egos don't allow it. However, I don't allow myself to be trampled over, either. There is a very tricky middle ground and the bottom line is getting the best treatment while doing everything possible to be treated well. I absolutely won't go back to someone who treats me badly.

Tomorrow I go back for a treadmill stress test. This has me nervous as my body is really not up for this. In 9 days I have surgery for a cancerous tumor removal. So, my decision is to do the treadmill ONLY as much as I feel comfortable. Not what they have planned, for sure. They want to turn that machine up to number 9 and have me dancing a jig on it. Well, this gal is going to stand firm and walk her walk, HER way.

Anyway, much more response than you bargained for. Many thanks for your reply, Jet. I had a good friend (met her in Brazil) named Jet - great name! We lost touch.

Take care,



Leigha the whole point of a stress test is to get your heart stressed out and see how it reacts. It takes a good run on the treadmill for this to happen. The other option is a chemical stress test and that isva nasty awful test. Good luck.


Morning, the classic 'but you don't look sick' line!! It is infuriating sometimes! Mostly I look normal, sometimes normal with a very dodgy walk when my legs don't work, but at worst I just look tired. - suppose the good thing about not looking ill is it doesn't worry my kids the bad thing is people don't make allowances for you being ill! A lot of people don't know I'm ill as I just get on with things and battle through it, but my near and dear ones can see the pained look in my eyes showing that's its all a struggle. But I'm my own worst enemy as I don't say if its a problem I just keep it to myself and work through it after all what can anyone do to help?!I have thought in the past that if I had walking sticks or bandages people would understand more? I am still young but know my limits and there are lots of things I don't do anymore as its too much! But no I don't look sick and i am! Wow a bit of a self pittying rant!! Ha ha I will cheer up now and carry on !! Have a good day all x


hi Louisa,

I love "normal" you know it is just a cycle on the washing machine, I also don't look sick, (walk with a limp, but don't look sick thus how can i be sick - right, and I find it easier when someone asked how are you? I find the quick and easy answer is good thank you (goes with the looks right). We all keep soldiering on with big smiles and big hearts xx


Ahhhhh! The "you don't look sick" line again! How familiar many of us are with that.

My physician Father suggested a response to that line years ago when I was enduring one case of mono after another:

(again, please remember my Father was a doctor -- a doctor who died in 1990 and had one coagulation problem after another which he described as "lupus, but not lupus. Something related to lupus and something which one day will have a name."

His line? "So, in what year of medical school did you take the course, 'how to bypass all those annoying tests and diagnose a patient just by looking at him?' Was it 1st, or 2nd year, or a seminar during clinical rounds?"

Of course, on the one occasion I used the line it was not well received. Made me feel better though, and that doctor never used that you don't look sick" on me again.



Love it!!! Dare I? Who knows. I've been blacklisted by doctors before (he he) for being too honest, and it could happen again.

My favorite doctor was also a dear friend, but we aren't always so lucky to have such, or have our father as a doctor, are we? Sometimes I day dream of a world with a medical establishment far different than what we now have but then have to come back to planet earth. Ah, well, one day at a time. We educate our doctors the best we are able.




The last thing I heard from my doctor, after telling him how I was feeling during last months was: ...sure?, you look fine !! -

But when I'm on "those horrible days" my mother , with only a look of a second, says: Today you're not feeling ok, are you?

It's really hard when people around doesn´t believe what you're feeling, Only those that knows you and who cares you can understand you. I'm starting to get used to it, so whatever that people tell you (like you are lazy or peevish), don´t listen to them!

I've just have a problem with my work-mates this week, and I guess it won't be the last one..


I'm glad you've got a mother who does know and understand you. She is a blessing!

After 23 years now of dealing with severe health problems I've learned that people can be very callus. I don't believe they mean to be but they just don't know any different. There are some who don't care but I think most do but just don't know how to act.

As for doctors, I think it is their training. And until that is changed we, the patient, must deal with it the best we can. Some doctors can be talked with straight on and others cannot. Second guessing that can be hard.

For those we work with, heck, that gets touchy also. Since I've not been working in many years now I don't have an answer for that one.

Either way, we've got to grow thicker skin along with everything else we deal with. I think we are all amazing!!!!!


"LOL" the old you don't look sick, tell me ! I played softball for 32 yrs and when i had my PE in 2009 and found out i had APS, LA + other things, my Dr. told me i wasn't allowed to play anymore. But in 2010 my team just bugged the hell out of me, saying your ok. So i tried to play agian but i could'nt do it anymore. Just this year in july i had player who i played with in 2008 call and asked if i would play ball with them,,lol i told them i have'nt played in 3 years i put on 35 pounds of fat, ( them players haven't seen me since 2008) I cant play ball anymore. They remember the old healthy me. Plus i was 50yrs old then now i'll be 55 in Sept. Hey most people i know think i'm not sick and they think it's just old age and lack of motivation, they just don't get it ? But we know better !.........Take care Don


Hi Don,

I sure understand where you're coming from! I used to be so active... riding 100 miles on my bicycle, trekking, scuba diving, - heck, you name it - I was active and in shape. I think some friends/family think if I just pushed myself a bit I could do more, but that would just give me a set back - yeah, we sure do know better. Today I had to have a treadmill stress test for my heart. Was dreading it. Actually the technician told me I did average for anyone in my age group and that had me feeling really good, they had me walking up hill almost at a run and I thought I was going to drop. Almost did. I'm a little older than you are and am feeling that we actually do fantastic just battling all we do!!!!!

Thanks for writing. I'm in Michigan, good hearing from others sort of nearby!



Oh don't get me started on this one!!!! Given that I respond negative to the blood tests the fact that I look shiny and bright and energetic was always thrown back at me with the next question regarding whether I was feeling depressed because it was all in my mind - of course the doctor never saw me crawling from the bathroom back to bed and crying in the dark because I was too ill to go to the damn surgery!!!!! The one time I was carried into the surgery I was told I was having a panic attack and to snap out of it. How many times have I been told I look really well and it can't be anything serious???????????? Dx


How well I remember crawling from the bathroom to my bedroom. And also, crying in the dark.... more than once. In the past 23 years it has not been my illness which has had me down but rather the people who I've had to deal with, including and especially the medical establishment.

We absolutely have to believe in ourselves to the point of looking down at them, even knowing we don't tell them. That sounds strange, but I go to a doctor now realizing that he or she is limited by the education received and may well not treat me well or correctly. I come armed with everything needed to get the best possible treatment, yet realize that they are limited. At the same time sometimes I am pleasantly surprised to find an open minded and intelligent person wearing that white coat; it is rare but does happen. Same goes for hospitals, but it is even more rare. This is a terrible way to have to be so I find my solace in many other things; I truly do not trust the medical establishment yet know how much I need them. A real catch 22.


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