Allison at Taking Life For a Spin posted a wonderful list of things you shouldn’t say to someone with chronic health issues.
I liked it so much I asked her if I could post it on my blog, luckily she said yes.
Please think twice before you say these things to me
(or to anyone with a chronic health problem):
First, before you read this list, know that if we talk regularly, you have probably said at least one of these things to me before…and that you’ll probably say them to me even after reading this list. It is ok. I love you anyway…and I know that you say these things out of love. I just want you to know why you get those awkward responses from me when you do say them…
- But you look good. I know you mean this in a good way, but just because you can’t see my illness doesn’t make it is any less real. Complement my hair or outfit or something, I’d like that. I guess it is the “but” in front of “you look good” that makes that feels like you are being dismissive of my experience somehow.
- You sound (or act) like you feel better today. Yes, even when I feel awful, there are times that I laugh and smile and enjoy myself. When you tell me this though, I never know how to react. I often am not feeling any better, so then I have to explain that. Maybe just tell me that it is nice to hear me laugh. Or maybe just let me enjoy the moment.
- You should be glad you don’t have to (work, be out in this heat, listen to that lecture, etc). No, I’m not glad. Trust me, I’d rather be healthy and having to put up with the everyday annoyances of life than going through this.
- I wish I could have a few days to stay at home. Sure you do. When I’m healthy and running myself into the ground, I do too. I often wish for a few days off. However, I’d never wish for this! What I’m going through is not a vacation. Don’t wish for it.
- You must be so bored. Nope. Boredom is when you have energy to spend and can’t find anything interesting to spend it on. I can’t remember the last time I was bored. I’m too busy trying to figure out how to get to the bathroom and back to be bored. Every bit of energy that I have is going into surviving my day. I’m not sitting here wishing for ways to entertain myself.
- This is ridiculous. You should (get a different doctor, try a different medication, etc). There must be (someone/something) that would help. Careful here. I share your frustration, and we all want answers. Casually telling me that I should get a different doctor or try a new medication sometimes feels to me that you don’t think I’m doing enough to get better. Do you know how many doctors, medications, supplements, and alternative treatments I have tried? If you don’t, then maybe don’t say this to me. I’m certainly open to new ideas – just talk with me long enough to get an understanding of what I have tried before you tell me what I should do.
- You should see House. I’ve heard this 300 times. He isn’t real. Trust me; I’m seeing every doctor that I think can help me.
- You’re at (work, school, etc) or having friends over, you must feel better! Not necessarily. On good days, I can medicate and push myself through some things. You aren’t with me an hour later when the medication runs out or when I crash. I know you are looking for any sign that I am feeling better. Trust me, when I feel better, you will know. I won’t keep it a secret.
- Just think positively and it will go away. First of all, you saying this to me suggests that I’m not thinking positively. I actually think that, emotionally, I’ve been handling this pretty well. I’m also very aware of the “mind-behavior-body” connection. Sure, stress makes everything worse and positive thinking can help. However, don’t over-simplify here. I can think about rainbows and butterflies all day, but the room is still spinning.
- I know just what you are going through. I have a few friends who suffer with chronic health issues. Ironically, they have never said this to me. They know enough not to. I do appreciate empathy, and anyone who has had vertigo (even for 10 minutes) does feel like a kindred soul at some level. Still, be careful with your words. Just because you drank too much and the room spun one night doesn’t mean that you know what I am going through.
- Any variation of “All things happen for a reason.” or “God gave you this to teach you a lesson.” I agree that the adversities that we overcome in life are part of what makes us who we are, and I’m all for learning from my experiences. However, when you say things like this to me, it almost comes across as “You deserved this.” Don’t go there.
- What are you doing this weekend? This falls under the category of just not thinking before you speak. I know this is just a typical conversation starter for most people. For me, it just reminds me of all of the things that I cannot do because of my illness. Also, answering, “Trying to get to the bathroom and back just like I do every day” is awkward.
So what should you say? I really have no idea. I know how hard your job (as my friend) is, and I often wonder whether it is harder to be the person who is sick or the person who loves the sick person. I know you’d “fix” me if you could. Humor is good. Laughing always makes me feel better. Tell me what is going on in your life. You aren’t rubbing it in because I can’t do whatever it was you did today – I still want to know about your life. Be understanding when I just don’t have the energy to talk to you on that particular day. Even listening can be too much some days. Just be there. Even if you are saying all of the wrong things…you’re still letting me know that you care. <3
Anyone with chronic health issues have something to add to this list? Leave a comment below…
Everything above, except for my introduction, is quoted from Allison. If you’d like to share this list, please get her permission, and give her credit. (but you all knew that didn’t you? Visit her at Taking Life for a Spin)
I’d like to thank Maureen from Sunshine and Chaos for writing a very emotional post for us. Maureen is on a mission to embrace the new her, a person with an unnamed invisible illness. Her blog is very up beat, and inspirational. I suggest everyone check it out.
Maureen told me that she thought this would be an easy post to write, but found it very hard. She said everything about her condition is just so general. ”When you not on firm footing you’re just out there flailing.” I think she did a great job!
I have a problem.
My problem is that I’m in limbo like my friend in the picture, Wile E. Coyote.
I have something wrong with one of my ears. I say something because the ENT doctor could only say “it” happens to a lot more people than what is realized and to try to find “a quality of life”.
My “it” is balance issues that started in 2000 and my having a chronic illness was finally confirmed by the ENT in 2005. What I have is basically an invisible chronic illness with no name. A “we know how you’re being affected, just not what is causing it“. I feel like Wile does in that picture. On firm ground one minute, in limbo waiting for gravity to take effect the next. I was healthy one minute, living in limbo the next without a specific diagnosis. No specific diagnosis, no possible cure, no plan of action that can help me get back on my feet and be a contributing member of society again.
The doctors would always ask me if I would get dizzy and I would say no. A big part of my problem over the years is that I rarely got dizzy. If I did, it didn’t last long and I would attribute it to something else such as getting up too quickly or having a head cold. I did have a few dizzy spells a number of years ago due to water in the ear and I don’t get anything like that. I NEVER FORGOT that feeling of the world spinning. And, I would add, my mother had Meniere’s and I saw how she reacted and dealt with it.
What it really felt like at the beginning was “the flu that wouldn’t go away”. Sounds like a bad horror flick, doesn’t it? On my bad days, that’s what it still feels like. I had high blood pressure for the first time in my life, light-headed, slept a lot, no energy, ached a bit, lost my appetite and had a bobbing feeling in my head. Different conditions and diseases were ruled out. The flu eventually went away and also ruled out were chronic fatigue syndrome, mononucleosis, peri-menopause, thyroid, my heart (in the beginning it would beat irregularly and at times fast), brain tumour (I would get a tingling sensation up the back right side of my head that would turn into a headache) and whatever else all those tubes of blood and other tests might confirm.
The best word to describe how I now feel is disequilibrium. Here’s a definition from the U.S. National Library of Medicine:
Disequilibrium is a sensation of impending fall or of the need to obtain external assistance for proper locomotion. It is sometimes described as a feeling of improper tilt of the floor, or as a sense of floating. This sensation can originate in the inner ear or other motion sensors, or in the central nervous system.
Now that I know that the problem starts with my ear, I believe keeping control of my head movements has reduced most of the symptoms. But they have only been exchanged with other symptoms and side effects. What I get is a woozy feeling, like I’m in a boat and bobbing up and down on small waves. I can be sitting still and it will feel like someone is shoving me to the right. I can stagger like I’m a bit drunk but be stone-cold sober. Changes in the weather affects me so much more. Before, it meant random sinus headaches. Now I start feeling off-kilter and want to stay in bed. Sometimes going for a walk will help me feel better, sometimes a walk only makes things worse. I will pace the hallways of my house just so I can have a “walk” and avoid being far from my bed in case I have to quickly lie down. I have a stationary bike that I use so that I can stay seated and not move my head. I take my cell phone with me on even the shortest of walks, just in case I have to call a cab to get home. On days when I want to, or have to do something, I’ll do it and have to lie down afterward so everything in my head can calm down. And, the rare times when I’m close to feeling “normal”, I sometimes overdo it and then I can easily pay for it for a week afterwards by needing to stay in bed.
After all these years, I the person, looking back objectively, can appreciate that in the beginning the doctors couldn’t tell what was going on with me. Everyone, including me, thought it was a really bad case of the flu. But, that idea lasted only so long. I understand that, even as the months progressed, my symptoms were still, general in nature.
However, I the patient, wish the questioning went beyond asking “light-headed or dizzy” and included asking about “balance”. I wish I didn’t live in a restricted-budget medical climate where a doctor is not able to order tests based on gut instincts and experience or not have someone else question some of the tests. That actually happened during one of my tests – a doctor questioned why my doctor ordered a test. I have never had a doctor do unnecessary tests.
I also wish that the family history of Meniere’s was taken more seriously. My mother had it and I would ask if I had it or if there was a genetic connection. I was always told no but it seems more than a coincidence that a close relative suffered from ear problems.
What I really wish is that I had a disease with a name. I could have a fighting chance at treatments or a cure. It would bring legitimacy to what I’ve been dealing with all these years. People deal with illnesses in different ways. I was only in my mid 30s when I first became sick. You’re supposed to bounce back, not stay sick. Some people understood. They were usually the older ones and had friends or family dealing with various illnesses. The younger they were, the more chances that I wasn’t believed.
Not being able to be as physically active means that my overall health and stamina has deteriorated. Heart disease and diabetes runs in the family. How has the loss of activity sped up the possible development of these diseases for me? How many years have been taken off my life? How will my final years be lived out? We never know how things will work out in the end, but we don’t want to rush things along.
As the saying goes, I truly am sick and tired of being sick and tired. And being in limbo means not much chance of going back to a normal life.
There are so many things that Maureen said that rings true, isn’t there? I wrote a post not too long ago about being happy about a diagnosis. Not that I had the disease, but that it now had a name. It is so very hard to have a disease that doesn’t have a name. As Maureen said, it would bring legitimacy to her suffering.
Thank you so much, Maureen, for talking about such a difficult subject, and speaking so honestly.
My first attacks actually started while I was active duty Navy. I’d been crouched under a dark aircraft for a good couple hours working on an engine and when I came out into the bright hangar bay, I got dizzy. It was easily brushed off as, “A head rush. Clearly I was under there too long.” But they continued.
And of course, before seeking a doctor’s advice, I got pregnant. And so any complaints of dizziness were brushed off as, “Well, you’ve got double the amount of fluid in your body right now; of course you’re going to be dizzy.” So it continued and I thought it was just a bothersome thing I’d have to deal with because, clearly, my body was more sensitive to how much fluid was in it than most people.
It wasn’t until after my separation from the Navy (honorable, just early for parenting conflict reasons), and after our second child that my husband said, “You know, I think you should go have this checked out.” So I did.
The doctor said it was BPPV – benign paroxysmal positional vertigo, as we all know – and there wasn’t anything he could really do about it, except give me some exercises to do and tell me to come back if it got worse. Well. Thanks for that, doc.
And then we moved from Washington to Nevada. For a time, I ignored the “spells,” as I called them. What else was I to do? But, of course – they got worse.
So it was back to the doctor with me. This time a new doctor, on a new base. He repeated many of the same in-office tests and checked my ears, cleaned them out, and gave me a referral to an ENT.
The ENT agreed with the BPPV diagnosis initially, and sent me for balance therapy. It helped a bit, and I enjoyed the sessions and the physical therapist I was working with.
Then I had a seizure.
Seizures are, of course, not usually related to Meniere’s, but migraines are related to Meniere’s and – to all our best knowledge after over a year and a half of research and trial & error – this seizure was migraine related.
Thus began the experimentation into how much effect, if any, food had on my Meniere’s. This is what we learned:
MSG has an insane effect on Meniere’s for me. If a food has MSG in it, within fifteen to thirty minutes of consuming the food, my heart rate will be doubled, I will be short of breath, experiencing hot/cold flashes, and – but of course – vertigo attacks that leave me bedridden.
The label “MSG” also happens to include High Fructose Corn Syrup. So you can imagine the rage I have at those, “It’s just like sugar!” commercials. No, it is not.
Of course, salt has an effect, from previous knowledge of how sensitive I am to fluid retention. So I’ve greatly decreased my salt intake.
In addition, I, the big coffee drinker, have had to seriously cut back on the caffeine intake. I usually only have a cup in the morning, and perhaps one in the afternoon or one in the evening. The interesting thing here is that I don’t feel as awful if I stick to grinding the beans myself and brewing it in a press-pot. I have yet to figure out the connection there.
What other treatments have we tried? Well.
Diuretic – The diuretic does seem to help, especially around my monthly cycle.
My first ENT had me on so many steroids…
Oral Prednisone – This. One. Sucked. I felt nothing but the side effects. I was moody, always short-tempered, tired, loopy, and I gained seven pounds.
Ciprodex ear drops – This was after the ENT installed a tube in my ear drum in order to better administer the ear drops. I’ll cover the tube in a moment. The Ciprodex really didn’t seem to help all that much. My inner ear was incredibly sensitive to the temperature the drops were at, and it seemed to actually spark a vertigo episode rather than help any.
Steroid injections – I don’t remember the name of the steroids they injected through the tube, but these? Did nothing.
So when I got sick of my first ENT running up the insurance costs for steroid treatments, I found another ENT. This one now has me on
Triamterene – water pill, of course
Elavil – Anti-depressant, with surprisingly unexpected helpful effects for those with Meniere’s
Meclizine – Emergency anti-nausea anti-vertigo med for when I have an attack.
Unfortunately, as with the past few days, we’ve discovered that the Elavil – a second round after a 1 month break – is no longer working.
And, thus? The search continues. I’m only 26 – there’s time, right?
Today my guest is Susanna, a lovely woman from Linköping in the southern part of Sweden. She is married and has three “almost grown up kids”. She was working in the school system, but last year she went on permanent sick leave from work.
Susanna has had Menières for about ten years, bilateral for three years.
She stresses that “with the support from my family and relatives life is pretty good today!”
Coping with my Menières by Susanna Ahlström
I had my first bad vertigo attack the summer of 2002. Before that I had tinnitus, fullness in my ear, and a few minor dizzy attacks. But this time I was really ill and the ENT doctor told me this was Menières. I was sent home with a diuretic and some pills for seasickness. And of course I was told to keep a low sodium diet. I felt better after a few months and started working again. But I never got rid of the tinnitus or the imbalance and the anxiety I felt was limiting my whole life. My boss saw how I felt and helped me to see a therapist. I meant to see her about 10 times – we had our sessions for two years.
After about 5 years I felt so much better and I started full time at work. My tinnitus didn’t bother meat all, I felt almost normal then I got a new chief at work. Let’s say this became a hard time at workand my Menière started bothering me again, now with several attacks a week. A period of trying different treatments started:
Betaserc, the Serc
I´ve taken the pills for many years now, increasing the dosage several times from 8 mg per day till today when I take 64 mg. This medication is meant to increase the blood flowing in the small vesselsin the inner ear. I’m not sure if it really helps, but I don’t dare to stop taking it.
I´ve been taking this for many years now on a low dosage. I can take an extra pill the days before myperiod begins when the body feels a bit swollen. And I keep on taking this medication, maybe it helps a bit.
I´ve been eating these oat flakes with my yoghurt every morning for many years. You take 1 gram of the flakes for every kilo you weigh, every day. The oatflakes have been processed in a special way, malted, and contains something called Anti Secretion Factor which helps the body’s fluid and secretion level to be stable. It´s rather expensive but my doctor prescribes it for me. My stomach has never been better!!
I had a tube put in through my eardrum in one ear while I was waiting for the Meniett. I was able to borrow the Meniett from the hospital to see if this was something for me. I felt less pressure in my ear while I had the tube, but this was about it.
I tried the Meniette for one ear for some months. I had so much hope before I started but this was nothing for me.
White crystals in a small plastic bag make me think about other things than medication but this is something you take with some water as soon as possible when a vertigo attack is coming. It helps the fluid level in your ear (and of course in the entire body) to become lower. It tastes really bad and almost made me throw up and it didn´t prevent the attack from coming.
When I got Menières in the other ear I took cortisone (prednisolone) on a very high dosage for a few days. I will never take it again if I don’t have to. I got hyperactive, had a high pulse/heart beat, got a gastric catarrh so bad I fainted at work and ended up at the hospital. And this treatment didn’t help me at all.
A rather new treatment here in Sweden is cortisone injections through the eardrum and into the middle ear. If the tissue in the middle and inner ear is swollen the cortisone can help. The injections are given 5 days in a row and you have to lie still on your side for about an hour. Before the injection I had anesthesia ointment on the eardrum to make it numb. This treatment was just a little painful, a quick pain while the doctor injected the cortisone. I got it for both my ears with a few weeks passing between, and then we tried it once again on one ear. I cannot say it helped much though.
This is a treatment I didn’t really want to try so when my doctor recommended it I wanted to wait and think about it. Then I became bilateral and gentamycin injection is no longer an option. Neither is surgery. I know they do the saccotomi shunt surgery sometimes but I’m told that many Patients who had the surgery are only helped for a short while. When I had my worst period of illness I believe the doctors could have done what surgery or treatment they wanted if I only got rid of the vertigo!
This seems to be my story. I’ve tried so many treatments without any success at all. For every new treatment I’ve tried my hope has diminished. But there are a few things I’ve tried which have made iteasier to cope with this illness:
This has helped me to relax and even to take away the constant dizziness in my head. Not for long only half an hour or so, but a very good half hour.
Chiropractic and massage
The constant dizziness makes my neck and shoulders stiff, and the stiffness in this part of the body seems to increase the dizziness. A chiropractor has helped me to make my neck better. A goodmassage has also helped.
First I met a counselor at the hospital who works with patients from the ENT department. Later, I’ve seen a psychotherapist for two periods. When I got ill again four years ago it really made me depressed. Life was not worth living although suicide was not really an option. The therapy has helped me to deal with being chronically ill, not being able to work, the guilt I felt of being a lousy mother and wife. At the therapist I learned not to fight so hard against an illness you cannot win the battle with. Now I try to walk along and follow the illness. We haven’t “made friends” but Mr. Menière is not my enemy any more. He is more like the annoying neighbor you have to live beside. I´ve also started medication to increase the serotonin level, with medicine also called anti depressive pills, on a low dosage. It doesn’t make life a feast but it certainly makes it easier to deal with the hard issues in a better way than being over whelmed by the problems.
Life today is rather good. The illness has taken a lot from me but also given me something. New experiences, new friends, new hobbies and I certainly have had to get to know myself!
**Please note that I (Wendy) have added links the treatments that Susanna tried. The links will lead you to sites that I found giving definitions of the terms, or to studies about the treatment.
As always remember that different treatments work for different people. We are not doctors and we aren’t telling anyone what they should do. This series is to allow people with Meniere’s to see how others have dealt with this disease.