I’ve been trying to write a post for weeks now, but I just haven’t been able to get the words to come out. I had a CTA scan of my head and neck on July 26th, that’s a CT scan that shows your arteries. I had planned to post about it, to show you the awful bruise the contrast caused, and tell you how I freaked out when the contrast hit me, but I was actually ashamed that I felt that way. They had a hard time finding my veins, as usual, and I, once again, felt ashamed that I’m difficult. I had a bit of a reaction to the contrast and had a very debilitating migraine and nausea for days. I couldn’t write, I couldn’t do anything. Lorraine was nice enough to do a Mindfulness Monday. I’m ashamed I haven’t written since then.
I feel that I have needed to write and tell you how I’m still struggling with the migraines, how the medication isn’t working, and how I can’t accomplish anything really. But I’m ashamed that I’m not better. I’m ashamed that I keep trying different medications and they don’t work on me. I feel like I’m failing. In our culture we are expected to take a drug when we get sick and get better, if we don’t get better then we aren’t trying hard enough. We should change our diet, exercise more…. You see the stories all the time, how someone beat this or that disease by doing these things. We are expected to fight our illnesses and get better, when we don’t we often feel shame. Or at least, I know I do.
With my migraines everyone has a solution. So many people have or know someone with migraine, it isn’t rare, but chances are it’s episodic migraine not chronic migraine. I’m asked so often, “Do you take medication?” and it’s followed by, “I take (or so and so takes)______ and it works!” I want to scream, “Of course I take medication! I take preventatives, and abortives, and supplements, and I use alternative treatments! Nothing is working but I’m afraid to stop any of them for fear it will get worse!” But instead I feel ashamed that I’m defective. Not only do I have migraines, I have migraines that won’t respond to treatment.
Weekend before last we went out for breakfast with Stuart’s father at our usual place. I ordered a gluten free pancake, when it came I suspected it was wrong, but they have never gotten my order wrong before, so I took a bite. I knew immediately it was wrong. I was poisoned. I called the waitress over and asked and sure enough, it wasn’t gluten free. She apologized and I smiled and just ordered a new one. I looked at Stuart with huge eyes and he just said, there was nothing that could be done now. His father said, “it was only one bite” Stuart explained that it only takes a crumb. I should have told the waitress that I didn’t want anything else and told Stuart and his dad we needed to go home, but instead I was too ashamed. I ate that new pancake knowing that I would be sick within an hour or two. I sat there listening to them talk, while my head pounded, my stomach started to ache and get tight and my bowels started to rumble. I ended up having to rush to the bathroom there and it was obvious my stomach was distended by the time we left. I felt even more shame that I could not hide it.
I’ve never been one who is ashamed of my cochlear implants, I know a lot of people like to hide them, but I like for people to understand that I have hearing loss, because I do get ashamed when I have trouble understanding people. I sit and “listen” to conversations, but I often don’t “hear” them, and I’m too ashamed to keep asking for people to repeat what they say. After you are told over and over that it’s not important, you start to believe it, so I don’t worry about it. Then I get more ashamed when I miss things that I needed to hear.
Yesterday I had a very bad day. I woke in so much pain, but more than that when I’d stand I would see stars and I’d start to black out. I asked Stuart if he could work from home, but before he could answer I told him no, I’d be okay, because I was way too ashamed that I needed him. I was not safe, but I was too ashamed to admit that. Last night was the first time I told him how I felt. Now he is afraid he has done something to make me feel ashamed, and I feel shame that I’ve made him feel this way. I’ve explained to him that it’s complicated.
I’m just coming to terms with these feelings. I’ve tried to put a label on this before and called it guilt, but that wasn’t right, it’s shame. Guilt is feeling that you’ve done something bad. Shame is feeling that you are something bad. So, yes I feel guilty about asking him to work from home because I don’t want to take him away from work (doing something bad), but I also feel shame about it because I am ill and have to ask in the first place (am something bad).
Do you have these feelings? This will be a major discussion coming up with my therapist. Shame is not a healthy emotion, this is something we need to battle sooner rather than later.
Picnic with Ants 
I have not had the kinds of issues you have had but I am feeling shame that I have been dealing with this mystery pain and swelling since June. And I have even changed my diet, too. But it is still with me and no end in sight. My hand is so painful that I can’t do some of the things I did on my own so I need more help. I feel badly that this is taking so long, they don’t seem to know what it is, and I get to feeling like a burden. Your issues are more debilitating. I shouldn’t be complaining.
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We both know that we have nothing to be ashamed of, but we still have these feelings, it sucks.
But you have the right to feel bad about things. you have been hurting for months now and it has changed your life!
This is a safe place. You can complain here any time with no judgement. And I didn’t feel like you were complaining, you were just telling me what was going on, just how it is. It’s out life, it’s not complaining, if you are just telling how it is. I’ve been reading your blog from my email, but I haven’t been over there lately to comment. Your comments here always mean the world to me. xoxo
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I know that when I feel shame it is because something is troubling me and I have not dealt with it. After they put me on medication to help me with the issues and then I have recurring bad spells, I feel ashamed to go back to the doctor and tell her that something is wrong. I’m afraid of being labeled a hypochondriac, which is ridiculous. I have diagnosed disorders so why should I feel ashamed to have the doctor help me. Part of that is that many years ago I was told that it was all in my head, by more than one “professional.” That was back when housewives were given valium and sent home to live their lives. We’ve come much further since then, but it still feels shameful to ask for help. Wow, Wendy. I’m on a tangent here! Thank you for bringing this up as now I can see that I do need to address this and get past the shame. But how does one do this? I am watching for ideas. Oh, by the way, love you xo and that’s nothing to be ashamed of 😉
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Oh, my lovely, wonderful Wendy.
You are not a failure!
These disabilities and chronic illnesses take away so much from us and we’re left with what we could do, what we thought we were going to do and our future in general.
And I know that most people are trying to be helpful but doing yoga in the rain on the third Sunday of each month, eating ten peas a day and gazing lovingingly at your big toe while you meditate on Saturn’s rings really won’t cure us. Bless them but their idea of chronic illness is colds and flues because they happen a few times a year to them.
Then, there are the medical people who get frustrated and tired that stuff isn’t working for us. Sweeties, we are the ones frustrated and tired that stuff isn’t working for us. We see you only for a short appointment. We live with this each and every day. We are not clones, we are individuals and treat us as such. If we were clones, we’d all be better now. Or robots, either or.
And then there’s the money that doesn’t get funnelled into research because there is something more important to spend (or waste) it on. Wars, Brexit, climate deniers, the list goes on and on.
It sometimes feels like we are in a room, a treatment is given to us and we go crashing into a wall because the door that exits to some sort of healthier living that we need to walk through keeps getting shifted and we can’t escape.
Wish there was something I could say to help. This whole, I’ll kindly call life situation, really freaking sucks.
Much love to you and Stuart.
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Thank you my wonderful friend. I’m not as bad as it may sound. I can’t imagine anyone with a chronic illness not having these feelings sometimes. I’ve been feeling it for a long time I just finally found the word, realized what it was. It’s not all encompassing and doesn’t paralyze me or anything. I know I’m not a complete failure and I feel pretty good about myself most of the time, but this feeling surfaces over and over, normally just in small ways that don’t last too long, but it affects my life. I wanted to know it others felt the same, and if they do, I want them to know they aren’t alone.
and my head is pounding! I was trying hard to get comments answered, but I’m not getting it done.
I love you. Miss chatting with you.
Much love to you and George.
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Thank you for acknowledging that we all feel this way. I may have laid it on a bit thick, but I really wanted to make my point, how we can be overwhelmed by this shame and not even realize it. I was brushed off by doctors too, I wasn’t told outright that it was all in my head, but I saw in my records that a doctor said I had a “laundry list of problems”. They may have stopped telling us to go home and take a valium, but they still weren’t taking us seriously for many years. Of course you aren’t that much older than me. You always make it sound like you are much older than you are! I’m really not too sure how much further we have come. I had a doctor recently tell me that I’m on way too many mind altering drugs, and I needed to get off one, she doesn’t care that it is helping my bipolar and I’m at the end of my rope with trying meds for that. Nope, get on a different one. This one causes kidney stones. She could give me a different drug to counteract the side effect (if that is actually causing it, it could just be me) but she won’t because she won’t add another med to my list. She had decided that I’m on too many medications and way too many mind altering medications. She judged me. She made me feel like dirt. She shamed me. What can we do about it? I think the first thing I’m doing it acknowledging it, talking about it, and I’m going to start standing up to it. I need to start paying attention to when I feel shame, and try to counter it. I’ll work on this and other ways, and we’ll talk, and maybe I’ll post more. I’m actually surprised that not every chronically ill person has felt this way at sometime. I love you back. xoxo
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Wendy – I’m so sorry that you are going thru this again – but no need to feel ashamed. I did have a long talk with John the morning y’all went out – he sounds good. Miss you all Zia Dot
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Oh Wendy. I feel EXACTLY the same as you. You have described it so well. I know exactly what you mean about people telling you what they take, and about how it is expected that the doctor guves you something and yiu get better, and if you don’t it is your fault. Oh my! I have EXACTLY this oroblem. I KNOW that there is nothing that is going to help me, and that everythibg is just going downhill, but people expect me to get better. If I don’t it is my fault. Am not tying hard enough.
Why does this happen Wendy? Why do people act kike this? It is NOT our fault.
I so feel for you. I am SO glad that you made this post. People need to SEE this.
U am so sorry thus is happening to you too Wendy. I don’t know what to say except thankyou for highlighting this problem. At least we know we are not alone with it.
I get this in my blog too. I am expected to get betrer when I know that I won’t. And so many times I have considered deleting my blog. I think, Wendy, that unless you have been in our position you can’t understand it, and that is why we feel shame – because we can’t meet the expectations of others, but we shokd not feek shame because it is not oyr fault.
I am so sorry that your migrains are so bad and that nothing is working. It must be absolutely horrible. Please keep coming back to your blog and letting us know how it is going.
Sending lots of love and hugs to you Wendy. ❤️❤️❤️❤️
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Oh Lorraine, I’m so sorry that you feel so horrible. I don’t know why so many people are the way they are. I’m trying hard to separate the people I feel safe with and trust their opinions and those who I just don’t care, I just don’t listen to, I just let their comments roll off of me….but it’s hard. It’s the little things that get me the most sometimes. Like the restaurant stuff, having to send my food back and knowing that they poisoned me…I should feel angry, but instead I feel ashamed that I’m different. That’s just wrong, I’m working on getting better about it. Funny thing, I think I was better about it when I was first diagnosed, but since so many people jumped on the gluten free kick who don’t actually NEED it, it’s harder for me to stand up for what I actually NEED.
I’m rambling. Thank you for your support and caring. I try to keep up with your life post on your blog, but I miss a lot. I miss a lot period. I’m fighting the pain so much today trying to answer these. I simply haven;’t been able to, but I need to. I care.
Love and hugs Lorraine. xoxoxo
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Oh bless you Wendy. I am so sorry you are in so much pain. I truly do not know how you manage but you do, somehow. I knowwnit is very hard though. It is awful about the foid in the restaurant. I think you are right that there afe so many people who have got onto this kick that thise who do TRULY have the problem suffer as a result of them. Din’t worry about responding to this Wendy if you can’t. I understand because Ai find responding hard as well. Sending you lots of live and hugs. Prayers too xoxoxo
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❤️ I have had to fight going down the shame spiral many times. Keep hanging in there!
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Always hanging in there!
I’m not going down the spiral, not this time. 😉
Just acknowledging that it’s there. I never understood that was what was going on before.
xo
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Hello my dear friend. Your post has made me quite emotional. I am feeling emotional because I hate to know you’re feeling like this. You have given me so much strength through your words and advice, and I see you as someone who is strong. I’m sorry you don’t feel strong at the moment, but you have immense strength inside you. You are dealing with chronic illness and you are helping so many others by sharing your feelings, experiences and honesty through your blog. This is strength.
Other people generally just don’t understand chronic illness, unless they are dealt with something similar themselves. There are some people who try to understand and others who don’t – and both types of people often end up saying the throw away comments about wonder treatments that have worked for someone they know. I think people just don’t know the right way to react.
You are dealing with some very difficult health issues and I look up to you as a role model.
I hope you can start to work through these feelings and use them to gain more strength.
Lots of love my beautiful friend,
Carly
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Hey Wen. Tough read. You are really going through some hard emotions right now. I am so sorry. I’m glad you are going to address the issue of shame with a therapist. I don’t think I’ve ever broke down the difference between shame and guilt! This has been an eye opener.i believe I have some soul searching to do at this point as well. Just so you know, you have nothing to be ashamed of nor anything to feel guilty for. You are loved dear lady. 💜💜💜
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Oh honey! I wish I could hug you so you knew you are not a burden and don’t feel the shame! You are many things….a light in the day, a sweet and giving friend, a beautiful heart, a loving wife. a wonderful writer, an excellent photographer…and I hope knowing that takes away some of your shameful feelings. gentle hugs Love you!!
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I can totally relate to everything you have said here and you worded it all perfect. I never knew how to explain the feeling, but you’re right. It’s shame and I don’t know why I never realized that was the exact feeling. I feel like people just think I’m not trying hard enough or making up the pain or something. I used to have chronic migraines almost every day. Now they are more sporadic and I just have the all day headaches which are nothing compared to what the migraines were. The first time I lost my vision to one was the scariest moment ever. So sorry you have to deal with this and I really hope something works for you and soon!
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Oh my darling Wendy, reading your post made me FEEL so very much! There is no shame in not getting better. That only means the treatment is not the right treatment for you. It is out there and I believe that you will find it. You must not give up the fight. It is horrid to go through so much pain for so very long. But it is not shameful! And it is not shameful to need support and care and love and to feel safe. If you can express these feelings to those to whom you are the closest, who hold you dear, please do. They need to understand. They cannot be there for you if they do not know. Please do not feel shame. You are going through a terrible time but please hold on and know that we are all here to listen and to support and to understand. For we feel the same way. You are not alone, Wendy. There is NO shame in doing so. I am here any time should you wish to chat. Please email me at LadyJany@seejaynerun.com. I don’t know YOUR pain. But I had unending migraine-type headaches for ten straight years. I felt as though I were going mad. Eventually, I found a treatment. Eventually, you will too! Believe this!
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It’s a vicious cycle with both shame and guilt, and I find myself caught in it every day in some way. But when I read your post, it hits me really hard – It’s so much more difficult to see things for yourself when you’re feeling that way, but my heart aches when I read how you’ve been feeling. I’m sorry you’ve been feeling so incredibly rough not just with migraines but with so much pain and feeling like you might black out with seeing stars when you stand up. I hadn’t really thought about the line between shame and guilt before. I feel guilty about a lot of things, even breathing and being alive, but you’re right, there’s also shame. I think you’ve done really well getting this into words because I find talking about how I feel with guilt/shame quite difficult, partly because it’s complicated and partly because I wonder if any of it makes sense to anyone. I just want you to know that you’re not alone with these feelings, but also that you deserve to not feel them. I think deep down you know you’re incredibly hard on yourself. You deserve better. Talking to your therapist about all of this sounds like a good idea. It’s made me question whether I should be going back to talk to someone too. Sending lots of hugs your way, Wendy ♥
Caz xxxx
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I’m sorry I’ve been away from here for so long. My head is not letting me do much.
I know this post sounds like I’m being really hard on myself, but I’m really not that bad.
I would be surprised if there aren’t many more people who live with chronic illness and pain who don’t feel shame, we are made to feel shame from society, doctors…..and we have self imposed shame.
I wanted people to know that it’s okay to feel this way, you aren’t weird, you aren’t alone.
We shouldn’t feel shame, we did nothing wrong, but you also aren’t bad, for having these feelings.
I have been talking with my therapist and she said that it is normal, it’s sad, and we need to fight it, but it’s very common.
She is pretty awesome.
I finally realized this was the emotion I was feeling because a doctor shamed me, and yet I didn’t even mention that in the post. duh.
She made a snide comment about how I was on too many medications and way too many “mind altering” medications. That’s a great thing to say to someone who is being treated for a mental illness huh? She’s a KIDNEY doctor! Argh! I’m still pissed off about it.
So, anyway, I’m okay. My migraine is intractable again and I’m having a hard time with electronics so I haven’t been around, and I miss you. I have been reading some of your posts from my email, but rarely get to blogs. Rarely on the computer.
I see the migraine doctor next week.
xoxo I need to jump over to your site to see if you are getting your surgery. thinking of you. W xoxo
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Absolutely – and I’m sorry if I came out sounding like ‘oh you shouldn’t feel like that’, I just worry about you and hate to think that’s how you’re feeling. I’m also a huge hypocrite; I feel shame, and I also feel heaps of guilt, like a lot of people with chronic illness do. It’s not bad and it’s not wrong, it’s just horrible when people you care about feel like that and you feel powerless to make them feel any differently. That kidney doctor sounds like a gem! Grrrr!
I hope all goes well with seeing the migraine doc next week. Don’t worry about reading other blogs. Take things easy and know we’re thinking of you xxxxx
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Oh honey, you didnt sound like that, I’ve just been hit with it a lot lately. You aren’t a hypocrite, you admited feeling shame, and guilt, in your first comment. But there is a lot of hypocrisy out there.
You know I do worry about not posting and reading others, just like you do, you posted about that recently. Any news on the surgery? I’m behind on your posts. 😶 you are a love Caz. Take care of you. xoxo
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♥
Re: surgery, it should be September 10th with any luck. Probably just as well it was cancelled because coincidentally last week I had my insides doing the twist again so have been in agony desperately trying to avoid A&E! I’m seeing the silver lining now 😉Feeling a little more human today so I think things with the stoma are improving.
How are you keeping? Don’t worry about reading my blog, and I would say ‘try not to worry too much about keeping up with other blogs’ but I know how ridiculously difficult that can be! I hope you’re managing some rest this weekend, maybe even a moment of respite from the migraines (wishful thinking?) Wishing you all the best with the migraine doc appt this week. Take good care of yourself xxxx
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Thank you for sharing. It helps us all not feel so alone. I had an RTA 18 years ago when my son was just 5. I was never able to lift him again and felt so guilty, ashamed and robbed. One day my friend visited and he ran up to her, jumped up – legs round her waist and arms round her neck for a big hug. I stated that I felt so awful that I could no longer hug him like this. With that he jumped down, jumped up on the kitchen side with arms and legs outstretched saying “now you can mummy”. We need to talk, open up and share more as there are points when we cannot see the wood for the trees but sometimes others can 😀
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What a lovely story. Thank you. If I can help one person feel not so alone, then sharing is worth it. It helps me too. I am opening up more, and standing up for myself more too. Thank you again. 💕
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You’re welcome. I think all we can ever hope is to make a difference to someone’s day and I think we both did that today 😃😘
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Thank you for sharing and no you are not alone. It breaks my heart that your medical battles make you feel ashamed. I do understand on a small scale. I don’t deal with chronic pain but I have hypothyroidism and I’m hypoglycemic. They both cause issues in my life the main one I hate is fatigue. With having 3 kids and a husband I have felt ashamed because of being to tiered to do anything, not being able to stay awake through a movie. Fighting to stay awake when my husband gets home so we can spend time together. Fighting to pretend like I have energy in a family outing when I’m looking forward to getting home so I can can go to sleep. All this made me feel ashamed. I decided though to make sure my family is educated with my illnesses and they are very understanding. I decided that I’m no longer going to feel ashamed for something that I cannot help. I do my best to fight it and have vitamins that I take and foods that I try to stay away from which help. I don’t want you to feel ashamed either. It sounds like you have loving husband who supports you. Keep the communication open and deal the best way you can. Due to imperfection we all have something to deal with, not our fault. I hold on to the bibles promise that one day soon , “No resident will say I am sick”, Isaiah 33:24😀
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