Being Free from Symptom Flares Makes Me Feel Like a Fraud
I’m a fraud. Or at least I feel like one.
When writing for a site about multiple sclerosis and setting up a business focused on my diagnosis to help others in the same boat, it is a requirement that I talk about my MS. But when nothing has changed, it makes it harder to know what to say.
Today, I’m sharing this because this week in particular, my MS has made me feel like a bit of a fraud.
Most people celebrate when their MRI results come back with no evidence of disease activity (referred to as NEDA). But my brain decides to feel slightly off about it.
How can I give advice and support to people about different symptoms and treatments when I haven’t been through these things myself?
I’m a big believer in teaching something only after I have experienced it. That is my rule. For example, it’s not my place to talk about progressive MS, because I don’t personally have the experience. I can learn from the experiences of my podcast guests, and that’s about all.
Today, I’m reaching out to others, who like me have invisible symptoms and feel it’s hard to describe to family and friends how symptoms feel. And I’m sending a shoutout to those who received NEDA.
Since my diagnosis seven years ago, I’ve had one relapse to date and many tiny fluctuations, or “blips,” as my MS nurse says. I do have horrible days, but they are once in a blue moon now.
I’ve started using appointments with my MS nurse to talk about different supplements or therapies I’ve tried that have or haven’t worked, so that she can pass this information to others. I spend much of my appointments talking through my business ideas to get her opinions about the ways I could help others like me.
There’s nothing else for me to tell her; I have no new symptoms to report. My medication, Tecfidera (dimethyl fumarate), is excellent and working.
Don’t get me wrong — I still have day-to-day symptoms like fatigue, nerve pain, and weakness. I also get brain fog, which you can hear in the blooper episodes on my podcast. I might say the wrong thing or can’t get my words out. (I find this hilarious.)
I also used to be very sensitive to temperature, meaning that if I was hot, my weakness worsened, and if I was cold, my nerve pain worsened. In the past few weeks, however, the sun has been hot in the U.K., yet I haven’t felt weak in the slightest. Why is that?
Is it luck that my MS is stable? Is it because I’ve mastered my mindset and don’t focus on symptoms? Is it the diet I’m on? Who knows what it’s all about.
Do you have mild symptoms that sometimes make you feel like a fraud? Please share in the comments below.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Alisa
Yes. I hear you. I have just had one clinical event with no relapses but had enough to diagnose MS. I am on 11 years post diagnosis and still run 5 days per week. No fatigue, no sensitivity to heat. NEDA in 11 years. This disease is so strange in how it affects everyone in different ways. I know I am lucky so far. I don’t take it for granted.
Jessie Ace
So True, Alisa, it affects us all in very different ways. Good on you for running 5 days a week keep at it! Stay #ENabled, Jessie
MammyY
I was diagnosed ten years ago, at age 70. I am a classic NEDA which makes my latest neurologist seem dismissive when I try to tell her that I am slowly losing ground. She tells me that others have a much worse disease course. I know this. I have always known this. And I am empathetic for those whose disease course differs from mine. But, even though my symptoms are mostly invisible (except my walking, which continues to worsen and require more effort), she has not told me that I do not have MS. The effect of her attitude makes me feel as if I am wasting her time.
At diagnosis, some of the brain lesions were bright, but those along the spinal column were older; there have been no new lesions since and those that were bright are no longer active. I was never prescribed DMTs, and have not experienced any tru exacerbations or relapses. All my exacerbations are labeled "pseudo" because none last more than a few hours. I do have MS, and I do suffer from an array of symptoms, but I keep the emotional and physical pain to myself. only occasionally venting as I do here.
Jessie Ace
Isn't it strange how it's different for everyone? We're all on our own journey, never let someone allow you to feel dismissed, what your feeling is real and is important to you. Stay well MammyY! Stay #ENabled, Jessie
Corissa
Jessie, I really appreciate this article! I've never before commented on something I've read, but felt the urge here. A lot of times, I click open links to things in the MS New today email as a read later/maybe I'll get to it thing. Today, I read your piece as soon as it opened. This is something I feel often, and much more so recently. I was diagnosed in 2009. Similar to you, I don't think I've had a real, true relapse since the event that led to my diagnosis (I do believe that something I experienced years before was, in fact, an MS event.) I have, however, had multiple "flare ups" and "blips." I deal with a lot of the invisible symptoms on a regular basis (fatigue being one of my worst, compounded by heat sensitivity, which is fun as a full-time dog walker in Los Angeles!) It makes me feel disconnected from the MS community. Like my MS doesn't matter, in a way. Especially when my regular symptoms or blips aren't as bad at a period of time. I start to think I'm not as 'important' a patient, so to speak, at the doctors.....it can send you into a tail spin of self-doubt. I've never had much of a social circle, so that adds to the disconnect.
Sorry for the tangent...your piece just hit the right spot at the right time! Wanted to say thanks for sharing. I'm going to look up your podcast right now!
Jessie Ace
Thank you so much, Corissa, that means the world to me. I'm glad I'm not the only one who feels this way. Thanks for checking out my podcast I'd love to hear your thoughts in a review :) Have you joined my tribe of warriors on facebook too? If not, I'd love to see you there. Have a great day and remember, stay #ENabled, Jess
Jeff Gullang
Jessie,
I have felt this way for the past 7 years, and I am convinced my doctors were wrong 17 years ago when they diagnosed me. I no longer have the double vision, the numbness, etc...and I think I am cured.
Now that I am on Ocrevous I only have 2 treatments a year so no more shots after 10+ years. Plus with the pedal free driving no more clonus problems. Totally cured.
But then I fell down the stairs, due to the stiffness in legs, (which I did last week) and and when I fell pivoting too quickly (two weeks ago) I blamed the one drink I have a year!
And that is when I remember that I have MS.
Just be thankful and content being a fraud...like me.
Dxed 2003 - Lying to myself since 2012
Jessie Ace
We can be frauds together Jeff! :) Have a great day and remember, stay #ENabled, Jess
June Murphree
Thank you for sharing your feelings about being fortunate enough to have minimal visible effects of a life with MS. I understand your feelings because I, too, have little obvious outward symptoms. I think that is just as important for others, especially newly diagnosed, to hear how differently MS affects each if us. I have had MS for 30 years, and while I have many bad days of fatigue, brain fog, and weakness, most days I am able to function as I wish. An MS diagnosis is frightening so it is important for others to know it isn't necessarily a worst case scenario. Stay positive, as active as possible, and surround yourself with love!
Jessie Ace
Glad I'm not the only one, June! We're in this together, stay #ENabled, Jess
Jane
My MS while having invisible symptoms, became the one thing that took all my energy to manage. I did learn strategies to keep a positive attitude and conserve energy.
Jessie Ace
Hey Jane, I totally get what you mean symptoms suck so much time and energy away from you. If it helps I created a symptom tracker book to help other warriors like me get in control of their symptoms, you can find it on my site www.jessieace.com hope that helps, have a great day and remember, stay #ENabled, Jess
Fiona
Hi Jessie,
Yes I definitely feel like a fraud sometimes, or more accurately that I must appear to have been flogging a lie!
I’m 56years old and was diagnosed four and half years ago with highly active RRMS. As a result I was treated with Alemtuzumab (Lemtrada) and live with mild disability, fatigue and pain for which I take Gabapentin.
Initially I was emphasising that there is no cure and that treatment slows up, but doesn’t stop disease progression. I also highlighted that relapses can sometimes, cause immediate catastrophic disability. I pointed out that consultations are twice a year and appointments with an MS nurse once every three months and this is primarily due to the expectation of seeing deterioration. Finally, that even with NEDA there’s the worsening as a result of the damage already accumulated, especially when combined with increasing age.
My last relapse was in 2016 and thanks to treatment, life-style changes and working with a neuro physiotherapist I’ve seen no new symptoms of worsening of my existing ones. As a result I sometimes imagine I can see people looking at me awry!
Although this is fabulous I don’t want to live kidding myself that somehow I’ve escaped any more of the evil monster. This is because I don’t want to be beaten up psychologically when the inevitable strikes or when MS begins to take bite-sized chunks of me on a steady basis. Fortunately I read Bart’s MS Blog and as well as pointing me in the direction of things such as the supplement Lipoic Acid, it is the place for a strong reality check! Only this last week there was a post on SPMS and the replies from those living with this stage of the disease are heart-wrenching.
I’d echo something that Aaron Boster says on his YouTube channel: that there should be shout outs/hugs for the bad news and good news and therefore we should be delighted we both have fraud feelings!
By-the-way, you may wish to consider a feature for your podcast on late-onset MS. Apparently it is massively on the rise, especially for women.
Jessie Ace
Hey Fiona, I will consider that thank you :) let's be frauds together! Have a great day and remember stay #ENabled :) Jess
Cindy
Fiona, I agree with the rise of the late-onset Ms. I am 62 and had been looking for a reason for my discomforts that started 7 years ago. All reports say the majority of those diagnosed are in earlier years but I am hearing more and more about those of us over 50.
I have been and still am an active woman who loves exercise, swimming, hiking, kayaking, etc. It is frustrating when my husband says, "are you sure you should be doing that." Yes! If I stop things go downhill faster.
Then there are those who don't understand when you need a day or two to rest to be able to function to capacity again. It is an emotional roller-coaster along with the physical one.
I am thankful that I have found this blog, thank you Jessie Ace! It does give me the knowledge that I am not alone in this and not that I am glad anyone has to deal with it, but I am not alone.
Thank you for encouragement, wisdom and the ability to speak my truth.
Frances Carner
Thank you for this article, Jessee. I was diagnosed two years ago and have had a couple of mild exacerbations. I, too, have thought that possibly others have felt I was putting on a show. I have felt like a fraud as you said you did. I have symptoms that can't be seen most of the time. I do use a cane just to rest on when I feel like I am falling. I have a Handicap Placard for my car; but people look at me like I don't really need to park so close the door of the grocery or pharmacy, etc. (This is even though I am using my cane.) I am fatigued many days -especially when it is extremely hot or very cold. I also have pain and tingling and numbness. The symptom that most concerns me is the brain fog. I cannot think of words so many days when I am talking. I am very thankful for my husband who is so patient with me. I was laid off from my position of 19 years because they had to downsize and since I was having the most trouble with thinking, I was the one released. Thankfully, they gave me wonderful severance package with health insurance paid for almost two years. (My job required lots of excel work and contacting customers and posting payments to accounts. There were days that I forgot how to do the payments. It was very embarrassing because I had been the go-to person in my department for. number of years. Suddenly, I couldn't do it any more.). I am sure I have said more than needed; but when people look at me, they cannot tell that I have a chronic illness. I feel frustrated and guilty many days.
Jessie Ace
Hey Frances, I totally get what you mean. I just wrote an article for Momentum magazine about an incident I had with a bouncer in a London bar, it was shocking! You know how it feels to be in your body and that's all that matters, people will think what they'll think we can't change that, we can only change our own thoughts. Stay positive, here if you need to chat :) remember stay #ENabled, Jess
RG
I have had NEDA results from my MRI's for several years but have terrible "invisible" symptoms, particularly fatigue and pain. I was born with a heart defect, have arthritis in the spine as well as mechanical injuries. In this confusing mix, I don't know what may be causing which symptoms but I do KNOW they are there! Generally one turns to their family for support but mine, not "seeing" problems with their eyes, don't really believe that MS is anything serious. I don't feel like a fraud but family/friends make me seem like one based on their attitudes.
MS is difficult to deal with no matter the circumstances or "type". It becomes incredibly hard when one has no support available on a daily basis and particularly so when those "invisible" symptoms put me down for the count. I can't tell you the number of times picking up an Rx has been delayed or I've skipped meals (sometimes for several days) due to my extreme fatigue with no one to call on for help.
I'd like to see you use your podcast to remind people that even if they know someone with RRMS who "seems ok":
OFFER help!
ASK what they feel inside and if they suffer at all! (many of us do suffer and need to talk sometimes!)
TELL them you are there to help or give support!
It adds to our pain to be treated as frauds while we and our docs know we aren't.
Jessie Ace
Thanks for the feedback, I'll certainly start talking more about the emotional support side when I next have a guest with MS on. Stay #ENabled, Jess x
Nicholas Brown
Useful article Jess. I've now been diagnosed for some 40+ years and am surviving well on Gilenya. The fraud sensation is absolutely real. I was in the highly active category RRMS until they got me on DMTs. Now I get the blips almost constantly, there are few weeks without symptoms, but nothing that stops my body functioning. It allows me to lead a very active life, hiking ultra marathons, mountaineering climbing, etc. I'm fitter than most of my friends, and certainly for my age group, and thus it provokes an interesting reaction from people I meet. Many simply refuse to believe I have MS. It's amusing but gives me the chance to explain that everyone's disease is different and that I believe exercise and diet bolster the effects of DMTs. It doesn't avoid that feeling of being a fraudster though.