The Unsolicited Advice We Get

The Unsolicited Advice We Get

Life can change a lot when you are diagnosed with a chronic illness like Multiple Sclerosis. You slowly learn that, over time, the way some people interact with you will change. Some people will be ignorant, some will try to pray for you, and some will try to fix you on their own. It’s this last situation that I want to talk about today. Specifically, the massive amount of unsolicited advice you get when someone learns you have an illness. Many of these people mean well, though some simply think they know better; it can come from those with MS and those without. No matter who it comes from, it can be extremely overwhelming and unwelcome.

Those without MS

I’m sure many people reading this have experienced it. Someone you know, it could be family, friends, coworkers, even just an acquaintance sees something about the disease online or “knows” someone with MS (it always seems like it’s their great aunt’s college roommate’s sister or some other odd connection). Despite not being a doctor or even having first hand knowledge about the disease, they feel inclined to inform you about what they’ve heard. This should be nice, right? People are trying to help. The thing is, when you have an incurable disease like MS, you tend to be on top of any major developments. I appreciate people’s sentiments, but trust me, having a painful and debilitating disease tends to make you follow all of the right things to keep informed. I worry that my expression or response isn’t exactly a happy one. OK, I know it’s not, because I’ve heard the same news from ten other friends before you. That and I probably also heard about someone trying whatever snake oil theory involved more than a decade ago. So please, forgive us, but we get a tremendous amount of this.

Also please remember that we have a complicated disease, we see specialists for it, and we are doing whatever we can to feel better. So while you may mean well, and a kale smoothie seems to work great for you, understand it won’t stop our disease. Giving us advice like “oh, you just need to exercise more” or “you need to sleep more” is in no way helpful. Trust me, we are already trying all of those things. We are also under the care of an educated and experienced professional (or should be). We will complain, because it’s hard not to, but that doesn’t mean we aren’t already trying to do everything in our power to feel great. Remember that MS is a real disease, and giving us some basic advice really diminishes that. It’s disrespectful. That said, I’d love to hear about your kale smoothie, just not if you telling it to me because you are expecting it to cure my MS!

Those with MS do it too

More and more, I’ve witnessed people with MS who are feeling good try to push their treatment onto others. They think they’ve conquered the disease and now they need to spread the word. They’ll tell everyone they come across about it, they’ll even create their own “expert” Facebook page. They essentially think they’re a hero and many look to become an “MS Celebrity” (which should never exist). While I am happy that someone feels good, I wish that everyone would remember a few things. For one, this disease is filled with peaks and valleys; having MS is a rollercoaster ride. You will feel good for periods of time and bad for others. This disease is also a long game, and whatever you are doing or feeling at any given moment is not indicative of your future.  Maybe you feel good because you stopped your medication, well, that may still have a profound effect later in your life. The treatments we use for the disease are always for later, not for now. Yes, there are medications and actions we can take for symptoms, but those are separate from the what we call the Disease Modifying Therapies (DMTs). So you may feel great in your fifth year of the disease, but how will you feel in year ten or twenty? Symptom-free does not ever mean disease-free.

It’s been said many times that those with MS are all snowflakes. It’s so true. We all have different symptoms and progression. There is overlap, but everyone’s disease course is different. Remember that before you extol the virtues of your treatment plan on someone else. It’s wonderful to see people sharing information, but there is a fine (and important) line between sharing what works for you and telling others that they need to do it too.

The “C” Word

When it comes to sharing something with me, one thing I wish everyone would realize, is that if something uses the “C” word (meaning cure), it’s probably a false hope. We see this a lot with MS. Every now and then, someone exclaims they are close to a “cure” or already found a “cure” or this one person is “cured”. I’m sorry folks, there is no cure for MS. They are likely not even really close. They don’t even really know the cause yet, let alone a way to stop it for good. That doesn’t mean that every time one of us sees that “C” word, that we don’t get excited. That’s a pretty awful thing to go through, those emotions you go through, even if you should know better, getting that hope that maybe someone found something to stop this disease. It is always wrong though, or it’s a theory, or a ways off, or worked in a very small sample size. So please, be very wary of anything using the “C” word and think before you share it. Don’t let your emotions get the best of you. Trust me, if a real cure was found, we’d know about it. Despite what conspiracy theorists would have you believe, there is a lot of money in a cure.

There is no cure, but there is still a lot to be hopeful for. We already have around three times the options of disease modifying therapies than we did when I was first diagnosed. That’s HUGE. We have more options than we’ve ever had and that’s a reason to rejoice. We have those options because people spread awareness about this disease. They spread information on fundraisers like Walk MS, Swim MS, the MS Readathon, and Bike MS. They’re getting closer to that “”C” word because of all of that. So please, share things that are MS-related, but understand what you are sharing, don’t buy into hype, and don’t try to fix us with an anecdotal tip you heard or saw from someone secondhand. Please do talk to us about MS, but don’t focus on a quick fix that doesn’t exist.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (32)
  • swampdoctor dave
    2 months ago

    Good article Devin, It has been several years since I have received any “advice” about my MS, although when I do I always thank the person but sometimes I tell them they don’t have a clue about what they are telling me. That usually ends the discussion.

  • CatDancer
    1 year ago

    Loved the article!!
    Is it just me or did anyone else notice the unsolicited advice that followed? I shouldn’t even phrase that as a question.

  • Devin Garlit moderator author
    1 year ago

    Thanks you CatDancer, yep, even despite the nature of the article, some of it still happened!

  • Pammie
    1 year ago

    Thank you Devin for writing this article! This has been one of the best ones yet! I know friends and family are only trying to help but it is sooooooo frustrating!!! Everyone else always seems to have “the cure” for MS. If you would only do this or eat that…I am on my 3rd MS treatment and I pray this one works for me. I am so tired of feeling so bad all the time. I would like just 1 day to wake up and feel “normal” again. You never realize how important your health is until you start loosing it.

  • Devin Garlit moderator author
    1 year ago

    Thanks so much Pammie , I appreciate that! Good luck with your 3rd treatment, I hope 3rd times a charm for you!

  • jn99
    1 year ago

    Thank you for this! Yes on the uncle’s best friend’s, sister’s brother-in-law’s sure cure. When I complained about our recent and record-breaking hot weather and how it affected me (brain melt, total muscle weakness, and emotional unreasonableness) a good friend told told me about an apparently famous person with MS who got a shunt in his carotid artery and, well, he was better than fine now. Really? A new one on me and I thought I’d heard them all in the 14 years since my diagnosis. What I really wanted was an empathetic ear and maybe some reassurance. Thank you for writing about this.
    Its supposed to cool off soon!

  • Devin Garlit moderator author
    1 year ago

    Thank you jn99. I think the number one thing anyone really wants, is for someone to listen. It can be so very helpful to be able to talk and explain your issues without someone trying to fix it.

  • Nomdeplume
    1 year ago

    Although I generally agree with you, I think it would have been better if you had omitted from your article the words “some will try to pray for you” from your statement, “people will be ignorant, some will try to pray for you, and some will try to fix you on their own,” because it suggests that people who pray are somehow in the same category as people who are ignorant and people who try to fix your MS on their own.

    For those of us MS-ers who do believe in prayer, probably half your readership or more, it’s mildly offensive.

  • Devin Garlit moderator author
    1 year ago

    Thank you Nomdeplume! I certainly meant no offense. Please do understand though, that for a portion of the people out there, not necessarily myself, they do see those offers of prayer as being in the exact same category.

  • AJH5521
    1 year ago

    Perfectly stated! I felt as if I was reading my own words. Great article!!!

  • Devin Garlit moderator author
    1 year ago

    Thanks so much AJH5521! Appreciate you taking the time to comment!

  • Jake
    1 year ago

    Many times when I share how MS has affected me, i.e. walking into things, locking the door to my home while the keys are laying on the counter, my mother never fails to say “we all do that”. But her best comment so far is ,”Ann Romney was able to find a ‘cure’, why can’t you?”.

    Grrrrrrrrrr ………..

  • Devin Garlit moderator author
    1 year ago

    Thank you Jake! Ugh, that’s infuriating! I’ve heard similar things in the past as well!

  • JanG6036
    1 year ago

    What is so sad is I know where mine comes from and there is never going o be a fix for me for as long as I may live

    Mothers mother was a diabetic Alcoholic which caused my mother to suffer from fetal alcohol syndrome which was passed to me ( my mother didn’t drink ) which is the cause for the stupid mutated gene . So anything with he “C” word is a joke to me but hurts all the same knowing nothing will ever work for me

  • Nancy W
    1 year ago

    I read the first few comments and see they are full of unsolicited advice! When someone who I feel i can talk to offers advice, I tell them that since this is an incurable disease, there are lots of theories out there. Many MSers who offer their own advice are just trying to control their lives. I think they figure if what they are doing works, then they don’ have to worry about progression.

    For me, one thing I think would be good for all MSers, is bodywork. I get a massage once every 6 weeks. It has really helped with stiffness. I used to take baclofen and haven’t needed it in years since getting regular bodywork. I think I will research this and see if it is a proven benefit.

  • Shasha
    1 year ago

    Hi, Untreated Celiac which may cause MS gets worse with age and menopause with low progesterone hurts. Getting more tick bites each year adds up. I can’t do massage since my legs are swollen due to Lyme, but the water jet in Hot tub after swimming helps me like a massage. Any exercise may help make more mitochondria. Sunlight makes me laugh and helps the immune system. Eating organic helps greatly. Not smelling gluten helps. Fish oil 2000mg helps my immune system. I take Osteoprocare instead of dairy and take Mg twice a day that helps. My neck/shoulders are stiff due to Lyme/coinfections. Bodywork is good. All people need touch and get the Lymph moving and get circulation happening.

    MS people have healed, but need to keep up their diet/natural supplements/detoxing etc which helps. LDN alone may help greatly since it helps heal the gut lining so more nutrients absorb. Alternative/natural help saved my life and helped me survive/thrive so people don’t see my MS. My friend healed fast too…whole life changed and now she wants to have “fun” since she was stuck in the wheel chair for so many years. She didn’t give up and realized with natural help she healed more each day. She is having a “normal” life now. She wanted it…was young made the effort. God bless.

  • Shasha
    1 year ago

    No gluten/dairy/soy/sugar/GMO/food with a label etc. and vitamins/good oils/minerals/probiotic…. LDN and detoxing help me. Vit D3 5000IU, zinc 50mg if detoxing, 2000mg fish oil, 2000mg evening primrose oil. 2000 mg lecithin, Phosphatidylserine/DMAE, krill oil, CLA, Coenzyme Q10, Rhodiola, Mg citrate 400mg, Vit C, 5000mcg of biotin, 10,000IU of Vit A, Nature’s Plus- Source of life multiple, HCl and Now brand- Super enzymes with meals, dairy free strong probiotic, Vit B12 methylcobalamin shot/spray/under the tongue kind/intrinsic factor kind…. MTHF folate, coenyzme Q10, rhodiola, may help brain/body/thyroid/depression/immune system and more. Gluten is wheat/barley/rye/corn…oats has gluten with avenin…and there is a small amount of gluten in rice. GMO corn/soy/canola oil may hurt. Amour thyroid maybe needed since gluten may make antibodies to the thyroid. Coenzymated B vitamins far from synthetic kind made me calm.

    Sunlight (helps the immune system and helps to heal the gut lining),exercise, organic food, good water..not tap water, cooking by scratch pure food….. no food in a box/bag/premade/label/restaurant which may help avoid hidden gluten. Certified gluten free food may have 20ppm of gluten…too much. Nuts not sold in the shell/meat basting/some spices/food with a label/ lotion/make up etc. may have hidden gluten. One restaurant cooks special for me…rice/veg/tea/extra mushrooms (no meat since the woks may have MSG/gluten in them).

    EDTA/DMPS IV chelations from an Alternative doctor, 600mg of cilantro, organic sulfur, Now brand- Detox support, Far Infrared Sauna and more may help detox. Hair tests show good minerals and heavy metals. Heavy metals can block thyroid and other chemical reactions in the body/brain.

    LDN may help block hidden gluten/heal the gut lining and help the immune system, but the Celiac diet is still needed. 100% no gluten..no hidden or microscopic gluten may help. Cutting back on gluten or cheating by eating gluten hurts the immune system. It may take 1 1/2 months to heal the gut lining after getting hidden gluten. HCl and enzymes with meals and gluten enzymes help me. There are now gluten enzymes also a person may use that may help, but LDN helps block gluten in the air/on the skin and all day long.

    Amour thyroid has some T3 and Calcitonin. Synthroid is only T4…may not convert to T3. Zn/Se/enough iron/strong probiotic may help convert T4 to T3 for thyroid.

    Alternative doctors/chiropractors/acupuncturists and more may help with health/vitamins etc.

    Books: No grain No Pain, Wheat Belly, Grain Brain, Dangerous Grains and The Autoimmune Fix and more explain Celiac. Peter Osborne/Tom O’Bryan on Facebook/Youtube.

    Longer version:
    http://articles.mercola.com/members/Shasha/default.aspx

  • Shasha
    1 year ago

    HI, I have had MS for 30 years. I do Alternative medicine. The cause of my MS is low oxygen in my brain due to Celiac. Gluten hurts my intestines so less nutrients absorb…then cells are not made right to work right to burn oxygen. Gluten hurts my stomach cells so I make less stomach acid/HCl and intrinsic factor to carry Vit B12 into my intestines. Progesterone/Vit B12 help Myelin. Vit B12 may not absorb when swallowed unless it has intrinsic factor. I take many supplements/do Celiac diet and detox. EDTA/DMPS IV chelations unclog my blood vessels and help detox heavy metals. I get sunlight/Vit D3 5000IU/walk/biotin 5000mcg/Zn/Mg/fish oil 2000mg/evening primrose oil 2000mg/lecithin 2000mg/coenzymated B vitamins/Nature’s plus- Source of life multiple. Vit A helps me soak air into my lungs/Vit C/Vit E/coenyzme Q10/rhodiola/HCl and enzymes with meals/strong probiotic…Cytoflora or Orthobiotic before meal/Amour thyroid not by TSH since my pituitary is not making TSH. Gluten hurt my pituitary/thyroid/gut lining/myelin and glands etc.

    I have low sunlight heritage/far from the equator where the highest rate of MS is in the world…Orkney Islands Scotland. Mitochondria…engines of the cells maybe hurt my antibiotics/chemicals/heavy metals/medicine/born that way. We inherit the mom’s mitochondria.

    MS can be helped by Alternative help. I don’t use MS drugs. Many MS drugs lower the immune system. I recently got Lyme/coinfections and need my immune system strong. Gluten may lower the immune system so it is easy to get infections and hard to get rid of infections. I do ozone/herbs/Far Infrared Sauna/strong probiotic for the infections.

    Any thing that raises oxygen in my brain helps my MS…things that help circulation/lower swelling and inflammation/unblock thyroid etc.

    I don’t eat meat/coconut oil/turmeric/resveratrol/flax/heated oils/saturated/monounsaturate fat. Colloidal silver hurt me greatly…blocked my thyroid/chemical reactions in my brain/body.

    Each person needs to figure out what helps. Hair tests show good mineral levels/heavy metals. Genova tests are for vitamins/allergies or hormones. I now need estriol/progesterone/testosterone. Progesterone lowers swelling and helps my immune system. Electrodermal testing/Zyto scan shows infections and how organs/glands are working.

    MS drugs let my friends go downhill. 1/2 of my MS support group has died already and to me many were undiagnosed Celiac. Fixing the root cause may help fix many health issues fast.

    Blood tests may not work for Vit B12/hormones/heavy metals/Mg/Vit A/Celiac/Lyme/Fe/thyroid and more and are not to be trusted. The ranges of normal may not be right.

    Many MS people had allergies that can be due to leaky gut due to gluten/GMO/Lyme/antibiotics. Antibiotics hurt me and let a few MS people die as they hurt the gut lining more/lowered Mg/lowered the immune system/wiped out good bacteria/lowered the immune system.

    Many MS people had symptoms of low thyroid and had cooling suits since they did not sweat well/air conditioners. They were given antidepression medicine due to low oxygen in their brain which can be due to gluten which causes low thyroid and low nutrients absorbed so cells don’t burn oxygen. Antidepression medicine may have fluorine which blocks thyroid even more causing worse depression/suicidal thoughts.

    MS people maybe given statin drugs which lower cholesterol, but thyroid medicine lowers cholesterol and helps the mitochondria.

    MS people maybe given spasm medicine, but Ca/Mg may stop spasms.

    MS people maybe given pain medicne, but the pain may go away with Celiac/Paleo diet..no grains.

    Stem cells…some may do this for $54,000 with Chemo, but Chemo hurts the gut lining and mitochondria. Some Stem cell transplants are $8,000 and no Chemo, but if the person goes back to eating gluten eventually they will destroy any good that happened.

    Angioplasty….unclogs a few inches of blood vessels, but just pushes it further down. EDTA/DMPS IV chelation unclogs all blood vessels…even those in the eyes/nose/toes etc.

    5000mcg of biotin/gingko/Vit E/Vit C/fish oil/folate/organic sulfur (at night)/low sugar all helped with circulation. Now brand Detox support at night was awesome also.

    Every supplement I took was like a miracle since I was so low in nutrients due to gluten hurting my intestines so less nutrients absorbed. I had 2 babies in a row which drained vitamins/good oils/minerals out of me and I was already low due to undiagnosed Celiac. My health collapsed…first thyroid due to gluten and then MS.

    To me MS people can be “fixed”……heal the gut lining by 100% no gluten/hidden gluten which absorbs more nutrients and rebuilds cells to burn oxygen/food/make ATP energy.

    Gluten is wheat/barley/rye..oats/corn/rice. I don’t eat premade gluten free food…eat nothing with a label since it may have 20ppm of gluten…the lowest they can measure which can hurt. Gluten may also be hidden in nuts not sold in the shell/meat basting/some spices/air/lotions/make up/food in bins/certified gluten free food. Eating pure organic food/sunlight/good water/exercise (helps make more mitochondria)…use it of lose it….friends/pets/prayer/God help me.

    Any tick may hurt…doesn’t have to be the Lyme tick. Not all MS people have Lyme, but some may have other infections. A Zyto scan shows infections in 4 minutes…very awesome to do.

    Conventional medicine did not offer what I needed so I went to Alternative medicine which saved my life fixing the root cause and getting my body/brain what it needed to be ok.

    I have seen MS groups get a 5 page message from Conventional medicine trying to scare them away from Alternative medicine. Alternative doctors/chiropractors/acupuncturists are all great, but I needed to figure out what helped me by research/trial and error. My protocol is what my body needs. A younger person may just be able to stop gluten and be ok. I was born Celiac, but now mostly it is Alternative people who will mention it. I will post my protcol since I do more than what is listed here.

    I had great help/hope…not false hope with Alternative medicine. A person can’t just take one supplement to rebuild a cell or cheat by eating gluten. Some MS people crave Chocolate…sign of low Mg. Some MS people may drink alcohol…may crave gluten in the alcohol.

    I go to one restaurant that cooks special for me. LDN helps block hidden gluten and may help 99% of MS people as it helps heal the gut lining so more nutrients absorb. LDN is less than $1 a day from any doctor, but usually Alternative doctors. Neurologists may not give LDN saying it is not proven, but it was like a miracle for me.

    My MS friend…was in a wheel chair…is not dating a new guy…kicked the other cheating one out and rides on the back of a motor cycle/went sky diving/has two part time jobs/got her drivers license back due to LDN and eating no gluten/dairy/soy/sugar/GMO/food with a label…taking vitamins/good oil/minerals…probiotic…LDN…detoxing. She didn’t do everything I did…was younger, but healed fast. The neurologist said she was in remission. She is not in remission. She needs to keep her gut lining healed and rebuilding her cells daily to burn oxygen etc and then she will be ok.

    MS people may trust Conventional doctors…I did until they withheld what I needed from me and friends and didn’t run tests and discounted things that worked like hair tests etc.

    I had to learn what I needed to heal. They don’t need a million dollars to figure out MS. The answer to MS and cancer and many other health issues is already here in Alternative/natural help which to me is God’s way instead of man’s way. I need supplements etc, but Conventional medicine is trying to make supplements a drug with colorings etc and call it a drug and charge more. They are trying to get rid of anything I do that works so they can have a monopoly and not let people know they can heal easily, but yes a person needs to eat different etc from the standard American diet which hurts the brain/body of all people in different ways.

    People who want to heal will find the answer. The “quick fix” takes effort…but LDN is a tiny pill taken before bed which may help a person fast. MS people wanted a simple answer…LDN/no gluten/supplements/sunlight/detoxing/exercise etc is simple, but takes effort. God bless!

  • Yoshitail9
    1 year ago

    Devin…on point once again. Unfortunately the world has become one big sound-bite so what little things people hear, react to and pass on without thinking or checking out becomes a very big thing for us MSers.

  • Devin Garlit moderator author
    1 year ago

    Thanks so much Yoshitail9 !

  • kelly1827
    1 year ago

    This! This is exactly why I am so circumspect about which diagnosis I have especially online. Not because I am ashamed or doubt it, but because I don’t want to subject myself to all the well-intentioned-but-no-less-annoying suggestions from Joe and Jane Interwebs. My Dad had PPMS before there was an internet and I watched him be subjected to an unrelenting barrage of “help”. I felt the need early on to protect myself from that. Typically I refer to my disease as an “autoimmune” or “neuromuscular” disease.

  • Devin Garlit moderator author
    1 year ago

    Thank you kelly1827! My grandfather also had MS, so like you, I’ve been around people with this behavior for a very long time. I 100% understand referring to your disease as an “autoimmune” disease and not giving specifics. I kind of with I had thought of that when I was younger!

  • Yoshitail9
    1 year ago

    Kelly…how about this….I bought a Harley-Davidson motorcycle baseball cap and when I feel feisty just tell them I ran off the road one day !

  • cmokon
    1 year ago

    Thanks for the article about one of my pet peeves. I get especially annoyed by the dietary “miracles” (“this woman cured herself of MS by eating an organ meat diet”–a vegetarian’s nightmare).

    I have friends who seem hurt when I respond with anything other than acceptance of their advice. I realize they “mean well” so my go-to reply is, “thanks! I’ll have to consider that.”

    But you nailed it.

  • jn99
    1 year ago

    I need to practice your response! Otherwise I’mafraid I’ll get pretty lonely out here….

  • Devin Garlit moderator author
    1 year ago

    Thank you @Monk, you are very right. Many of these people are quick to say the pharma buisness is just out for money, but are in fact making a lot of money themselves by peddling their “natural” cures. “Cures” that have no scientific studies to back them up, only anecdotal evidence, if that. “Natural” does not mean better and does not mean that no one is profiting.

    Your point about blame and depression is on point and one of my biggest concerns as well. So many people push these alternatives to what their doctor says, it doesn’t work, and then it effects them. It’s dangerous and unconscionable. I tend to point this out a lot in many of the pieces I write and take some backlash for it too, but it must be said.

  • Devin Garlit moderator author
    1 year ago

    Thank you cmokon! Yes, the dietary miracle people are often the worst, extremely judgmental too! Pretty sure I’ve used that exact reply on many, many occasions!

  • Monk
    1 year ago

    @1q96ddy Dietary “miracles” are one of my pet peeves, too. Some who have “cured” themselves write books, have clubs for around $200 a year or retreats for $1000 or more to learn the special diet and meditation, etc. We need to hold these people, who make these claims, feet to the fire and ask tough questions. i.e. Are the profiting from their claims?
    One of my concerns is that people will blame themselves if the diet doesn’t work. Self-blame can lead to depression. Depression is higher in the MS community than the general population. We need to learn more self-compassion not blame.

  • tfs
    1 year ago

    You made me laugh, Devin. Kale smoothies. Keep writing. You are wonderful.

  • Devin Garlit moderator author
    1 year ago

    Thank you tfs 🙂

  • Devin Garlit moderator author
    1 year ago

    Thank you 🙂

  • Monk
    1 year ago

    Ditto from me, too!

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