My Parent ( I won’t say Father or Mother ) I only have one in my life- The other ditched a long one ago) I am older now with a few young adults of my own , stressfully and happily married 26 years now ) anyway...
I heard my Parent wanted to get a drug intervention going on me - pre-diagnosis ( before Lupus came into my Life) I’ve had several symptoms for many years. I’ve lived with physical pain for over 25 ! I’ve struggled extreme changes mentally and physically in the past 3-4 .
I knew as the past year got worse And I HAD to become a HARDCORE self ADVOCATE for myself, it really seemed to me to be some form of Lupus. I got tested at a Wonderful University here and yes indeed it was a SLE.
But because of all the talk and ugly wrong assumptions beforehand (thinking it was Drugs fault for pain for Fibromyalgia)the support for me for aLupus would make my parent feel guilt? I say Why not give it now anyway?
Also, The worse part is friends that say , go out and get involved in hiking and nature! I have extreme photosensitivity that causes me horrid migraines for days, Much hair falls out and I get skin tags and rashes. my arthritis is terrible( fibromyalgia is terrible) thyroid disease is not great( and I’m in Menopause! All my kids have left the house. These people are still with their young pre-teens and younger children, some have immune diseases and some even cancer. So what can I really say back?
I have heard 2-3 people even Aknowledge to me anything about Having this. My whole life is different. I’m declining very fast and I can’t do anything to stop the brain swell or chest pains, confusion. Migraines, sleepless nights, strained relationships , sore aching body, sores, toothaches , mouthsores,. Bald spots
I have decided I am going to focus on people worse off , sink into my faith. Love my life and family as much as I can and give much , as much as I can. But some days it’s very hard. And some days I look and sound too dumb for my perfect parent and my family. I think they even all doctored up their private info so I can’t be traced to them. They are that embarrassed of me. They ran me off social media too. All because they thought I was abusing Drugs. All it was , was SLE and wrong prescribed treatment. Now, I am on the meds the Doctors think I should be on and my parent said to me , “ these drugs are making you feel and act up , not the Lupus!” Well Doh! It’s a combo and it can’t be helped! Maybe a little TLC and support? A little time spent with me? Some understanding?
Does anyone else relate to this?? This parent has been sharing things I talk about with my family and some towns people , my brothers and swayed my kids! I’m devastated! I have been made to look a fool! Last night I was so distraught my husband had to help me in the tub because of the stress on my broken heart. I feel so alone.
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MO3S50
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I can relate to parts of that. My mom just recently had to finally start dealing with drs of her own issues and got the typical run around and different answers for recently dx diabetes. She said to me
“ I wondered if this is some small way what you’ve had to put up with trying to get answers all these years? I’m so sorry for you!”
Shocked me. And gave me some sad satisfaction of sharing this ( wish she didn’t get diabetes). I say don’t waste precious energy worrying about something you cannot change. Other people are going to think or act in ways that I don’t want or agree with, however my reactions to them my change them. Or not
ThankYou for taking time to reply. Your so right on my reaction. It just feels good to talk about it a little. And this forum really encouraged the sharing. Good Luck with Your Mom !
It goes without saying also that I have always felt bad for my kids and my husband and have done as much as possible to hide when I am not feeling well and to put them first always when I could and can! There is much guilt on being a sick mother. That is for certain !
Yes..that feeling of guilt...None of us should feel guilty, but I have read so many here that do feel guilty.....My days seem to have a pattern ...in varying degrees ...when the FATIGUE hits me, I still can't believe the feeling....My Hydroxy has helped with my small joint pains and I stay out of the sun..OR ELSE!!! I do go out but with FULL protection...My Best to and for you MO3S50
I feel so sad for you reading this. SLE has ruined my life. I empathise with the lack of understanding from others. This co dition is so unpredictable. Find people you do trust and use them for support. Use this forum. Try and stay emotionally as strong as you can. Sending cyber hugs your way.
ThankYou so much for this! Today was an extremely hard day! It was hard getting out of bed. There was a HugE incident that happened since this post and I found out so much betrayal has been going on behind the scenes of my life.. I really can’t believe how much my family has no faith in my capabilities as a business person and a decision maker just because I’m ill and on meds. It has really set me back physically.
I will take your advice and get stay strong once I can grasp how little faith and support I will have going forward! Thank God for this site. What would we do without one another to confide in? Making myself get a good therapist and. New calander. ! With all the depression I seem to have missed my big appt at the Rheumatologist. My husband said I better get my “ stuff” not the word he used together. I don’t know how to any better , Im so tired and so achey. Lol... All while trying to keep it together and seem normal enough for everyone who is so mad I’m not the same person.
You are definately not alone with you're experiences. What you wrote is all too familiar to a lot of us. I'm middle aged and after many flares combined with 50 years of chronic invalidation and lack of concern from both parents - I had to find good solid psychological help to understand who they really are.
The fatigue and extreme trauma of the illness itself and what you're going through can also warp your brain and make you more vulnerable and reactive to others. I'm naturally jaded - but when I become ill this becomes rampagingly worse.
For me It's been a terrible sense of being alone and having to reconsider who my parents actually are - however for me this has been a slow miserable blippy 41 year process since the age of 9.
Until the dust settles with your Lupus and medications - ( yes ! Some of them are real mind benders and can make you percieve, feel and behave differently ) do your best to put all your thoughts regarding the parent - and not very helpful advice on hold.
Sometimes you can loose touch with who you are when you're drugged out, traumatized & ill - so try and refocus. Think about how best to look after yourself and what will make you happy right now within your own circumstances. The happier you are - the happier your family will be. Its not so self centred as it sounds.
The last thing you need right now is to worry about what people think of you.
When you're feeling better is the time to perhaps have a go at learning what is almost a new language - how to educate & train those around you so they understand what you're dealing with.
With me SLE has mostly effected bits of me that can't be seen. It was an eye opener when I developed a relatively benign condition (Raynaulds) that makes my fingers and toes go melodramatically blue. Just as a party trick I decided to show one of my delightful parents. The shock was almost funny. They could actually (briefly) understand something that they could actually see. Got a pair of moccosans out of it. 😁 but no tea and sympathy.
A lot of it's just ignorance. It's wether people are willing to overcome that ignorance that's telling.
But as I said - don't waste valuable energy getting justifiably angry at others. All the more complicated stuff can be dealt with later - 'if you want to'.
This is just so relatable as well as the other posts! my parent and very best friend even had “ interventions” in play and other group things where I was doscussed before my diagnosis. So a lot of dirty laundry has circulated before my validated diagnosis! This was the precedence Before the whole lupus Came to surface.
I am making an appointment today with a good therapist. I will do what I can to pull out the inner peace. I’ve just felt so defeated. My parents have 5 marriages between them.if you connect the dots in social media, im pretty insecure with the gossip.
Yes, I seemed to be in a permanent fog when on drugs and only when I came off was I able to think clearly again. It was frightening not to feel in control. x
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