Accepting the Truth After All of These Years

By Calie Wyatt

4 min read

It hit me the other day that I’ve had MS for half of the time I’ve been alive. I’m 28, and I was diagnosed when I was 14. And I showed signs of having it long before then. Obviously, I’ve always known how long I’ve had it, but the realization that it’s been a part of my life for half of my existence randomly decided to slap me in the face. It blows my mind to think that I’ve had MS for that long. It saddens me in a way, but what's even sadder is when you’ve had a disease for so long that you begin shaking off symptoms as being normal. New pain? Oh, that’s nothing. So tired you can’t walk? Normal. Tingling in your feet? A thing of the past. That ache in your back? Just another day in the life. The thing is, all of those things feel normal to me.

I don't remember life without MS

I’ve had MS for so long I can’t remember what it was like to be without it. I can’t remember what an actual healthy body feels like. I shake off symptoms as nothing because to me, they’re just an everyday thing that I’ve become used to. There's never a day that’s symptom-free. Even on my best days, there are still signs that MS is there. MS is ever-present. It’s always there no matter how hard I try to turn my back on it. It doesn’t matter how much I ignore it, it’s still lingering. What’s sad to me is how it’s no longer something that bothers me so much as it is just a normal part of every day. I know it’s been there, and it’s not going anywhere, so I’ve just kept moving through the motions without really thinking about it. But, for as long as I’ve had it and as normal as it may seem, it has still been a constant struggle to accept that I’m sick with a disease that has no cure.

I thought I had already accepted it

I think I’ve been confused because for a long time, I have honestly felt like I have accepted it. I've even written about how I thought I've accepted it. I’m positive and happy, and I understand that it’s my life, but it wasn’t until the other day that I realized that maybe I haven’t fully accepted it after all. I’ve made peace with having MS, and I’ve admitted to myself that it’s a huge part of who I am. I’ve stopped fighting the fact that I have a disease. I’ve stopped hiding it and pretending like it doesn’t exist. I’ve admitted to the world that yes, I have MS. And, I’ve found a way to view each day positively. But, accepting it is still a struggle.

It still doesn't feel real

Accepting and admitting may seem like the same thing, but they are slightly different. Admitting typically means to confess, but accepting means believing it to be true. It’s honestly ironic. I’ve felt all of the symptoms, and this disease has caused me more pain and issues than I can tell you, yet it’s still hard for my heart to want to believe that it’s true. I don’t want to believe that I have MS. Fifteen years in, and it still doesn't seem real. It’s like that horse pill you keep trying to swallow, but no matter how hard you try it keeps coming back to the surface. I think it’s hard for me to truly accept it because accepting it feels like defeat. I don’t want to accept MS and become comfortable in staying where I’m at right now.

Live without allowing defeat

I don't want to accept MS and be ok with the fact that my disease most likely will progress and become worse, because who wants that? But, I’ve said from the beginning that I don’t want MS to hold me back. And I know that no matter the circumstances, I want to do my best to not let that happen. I think what I didn't realize before is that acceptance doesn't have to happen overnight. I can take steps each day to accept it, and every day that I take a step towards that is a day closer to full acceptance. So, what I want to say today is that I agree to begin steps to fully accept my MS on one condition: That I continue to live without allowing defeat.

Time to stop fighting acceptance

I’m no longer going to believe that lie. Accepting it should be victorious and should be celebrated. It takes guts to accept the fact that you have an incurable disease. The longer I refuse to fully accept my MS, the more I deny it. And by denying the truth, I can’t formulate a plan to move forward. By taking steps to accept it, I’m giving myself permission to stop fighting what's right in front of me. I can’t deny I have MS, I’ve admitted it to the world, and now it’s time to stop fighting acceptance. But while I’m done fighting accepting the facts, I’m most certainly not done fighting MS. As I said earlier, even though it feels like my normal, its still a tough battle and I'll continue to fight it until I'm no longer able. Today I take my first step to accept MS knowing that I won’t allow it to defeat me, but that I will continue to overcome.

XOXO,

Calie

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caninemom6142 Member
It blows your mind that you've had MS for half your life, and you're only 28? WOW! Wait until you're my age! I'm 72 and was diagnosed 37 years ago, that's more than half my life! I do remember what life was like before MS. I worked. I was a runner. I worked out with weights every day for at least an hour. I went out with friends to events, weddings, showers, the movies, the beach...etc.. I rarely leave my house now. Just about everything is exhausting. I'm one of those people who was taught to look at things the way they really are, not the way I'd like them to be and I'm brutally honest. It's been my experience that people don't like brutally honest people because so much of the time the truth can be ugly. MS has defeated me. It has changed my life far more than I ever expected. I am not the person I used to be, I'm not the person I want to be. But, there's nothing I can do about it. I take one day at a time and do the best that I can. MS has defeated you too, but you're young, you still have some optimism and if you can fool yourself into thinking that life will get better, that MS will suddenly disappear, you'll be okay, for the time being, until you get to be my age and realize that several decades have gone by and it's still with you and has made your life just a little bit more miserable.
1. meandmyshadow Member
 I, too, was diagnosed when in my 20s (42 years ago) and am about to turn 70. I now know, in hindsight, just how much of my life was hijacked by MyShadow, and often mourn all those plans/dreams I once had. MS is a mean disease that can be subtle in its cruelty - but human cruelty can be worse, causing deep emotional pain to those who struggle to maintain their own humanity.
2. legsonstrike Member
 @meandmy shadow,you took the words right out of my mouth,i was diagnosed at43 but was told i had it at least 15 years prior to my dx. I was so active,playing softball,volleyball,water skiing,roller blading,we did so much every weekend and then it just stopped over night and i never regained any normalcy back in my life,I'm52 now and just can't imagine what my life will be like in ten years. I have RRMS and have been on8 different DMDs and so far the last year i haven't had any relapses or new lesions in my brain but my quality of life is just deteriorating every day. I have gone from a cane to a wheelchair to a walker now back to an automatic wheelchair because i have no feelings in all of my limbs and can not use a manual Wheelchair. I lost everyone of my friends that i had four a lifetime and the rest are just acquaintances now. In only 7 years,i feel like I've lost everything except my husband who is very understanding and patient with me and my parents and one sister,(i have two sisters,one never calls unless she wants to say ugly things to me like the last time we talked,she said she was coming home to drag my crippled a##through the mud. I have cut her off completely. It's just a challenge every day!! I love each and everyone of you all and I'm so thankful i have this site to express my feelings
pianomn Member
Callie, I just turned 60 years old and i was diagnosed at 20. That was before marriage, children and grand children. Maybe I’m an optimist. I have always tried to live by the mantra, I have MS, MS doesn’t have me!!! I’m lucky that I have friends and family who are there to help me when I need it. Yes having MS sucks. But it doesn’t have to control your life. There will always be good days. You just have to notice them
msjuneb Member
I applaud your attitude/outlook. Everyone has something they are dealing with, and I firmly believe in that old saying that " it's not the cards your dealt, but how you play your hand.". Accepting that you have MS is far different from letting MS defeat you.
legsonstrike Member
I was seeing a psychologist to help me accept this disease,i quit going because i feel like she has no idea what I'm going thru and each time i go i see a new one,I'd like to talk to the same one each time i go and that way she will get some kind of understanding of why i can't accept the fact i have MS, and i can't stand for anyone to be standing ore sitting in front of me and say she doesn't remember she has MS or she has MS and some things just don't make sense too her any more. I know i have to learn to accept what people say around me,for example,why are you in a wheelchair,you don't look sick? Is there a certain way people look to be sick or disabled?? It really irks me!! My attitude is horrible right now because i don't get to do anything i want to do and what i get to do is always on other people's terms,I'm so frustrated because i can't even go shopping without someone rushing me so i shop online and just stay to myself and I'm just ugly to myself and others. I need to be grateful for such a loving husband and family(most of them). Any suggestions??
1. Calie Wyatt Moderator & Contributor
 <inline-mention user-id="4040649" username="legsonstrike"/> I’m so sorry to hear things have been difficult. I know when you’re feeling so down it makes feeling positive about anything feel near impossible. For me- my husband, my little ones, family and friends are what really push me and motivate me to keep looking up. Have you explained to your family how you have been feeling? I know at times, even if who I’m talking to doesn’t really understand, it’s nice to just vent and let it all out! Please know we are here for you in this community!! Thank you for commenting! Best wishes, Calie
legsonstrike Member
@meandmy shadow,you took the words right out of my mouth,i was diagnosed at43 but was told i had it at least 15 years prior to my dx. I was so active,playing softball,volleyball,water skiing,roller blading,we did so much every weekend and then it just stopped over night and i never regained any normalcy back in my life,I'm52 now and just can't imagine what my life will be like in ten years. I have RRMS and have been on8 different DMDs and so far the last year i haven't had any relapses or new lesions in my brain but my quality of life is just deteriorating every day. I have gone from a cane to a wheelchair to a walker now back to an automatic wheelchair because i have no feelings in all of my limbs and can not use a manual Wheelchair. I lost everyone of my friends that i had four a lifetime and the rest are just acquaintances now. In only 7 years,i feel like I've lost everything except my husband who is very understanding and patient with me and my parents and one sister,(i have two sisters,one never calls unless she wants to say ugly things to me like the last time we talked,she said she was coming home to drag my crippled a##through the mud. I have cut her off completely. It's just a challenge every day!! I love each and everyone of you all and I'm so thankful i have this site to express my feelings 
1. maryaijj Member
 Wow. Im sorry. I have been ill with Ms since 24, I m 59, now and with my Big Brother(my Christian Hero) things would be different. Instead all 3, left me to 24/-7 care fir my dad and after year 3, I dint know what they did but it was evil and everything has changed for the absolute worst for my Daddy, his Heart ID broken and I feel like I let him down. I did. They all 3 came down and did something McCobb, including lieung to police and attempting(including being physically harshly tied down and restrained over 48 hours, until the precious nurses listened to me- its all about $... Getting Dad thrown in a way less expensive place than he can afford and attempting to get me institutionalized and out of way....I didnt and wouldn't take money to care for my Dad, who got this way working his tail off and giving it All to his family. How can 2 be kind and 3 so evil. Now for Dad, I m staying away, I m out here with nothing and himeless, nmbut I called my Daddy and lied and said I m ok....I m gonna be the kid that doesn't cause you $ trouble(the 3 sharks would make him miserablrle. He Is mentally competant and they just came down and victimized us both after 3 years of neglect and abuse to us both....wishing me to stroke out(one of my conditions, ms, arthritis..and more....I just cry, blow my nose, and sit in the corner I found, just lost.
2. maryaijj Member
 I couldnt bare children, widowed, they are keeping my Dad from me And staying in his Own Home-I m disabled and thats the angle they tried to hurt me...my Dad and I are victims and any move I make to see him, help him, go near him....dangerous.....its so unfair...I m so alone and scared. My Dad is too, hard ENUF with your daughter bathing you, wiping you, everything....his nerves are shot and now this....so Im begging for Prayers For Archie, my Precious <a href='http://Daddy.thank' target='_blank' rel='noopener noreferrer ugc'>Daddy.thank</a> you.
legsonstrike Member
Callie that is a wonderful article you've written and I feel like I'm getting there as far as acceptance, just taking baby steps each day as it seems to progress. Thank you so much for being there for all of us!!
1. Calie Wyatt Moderator & Contributor
 <inline-mention user-id="4040649" username="legsonstrike"/> thank you so much for your kind words! I’m so glad to hear you think you’re getting there, acceptance is never easy. We’re here for you every step of the way! Best wishes, Calie
2. maryaijj Member
 Meant I love your can and will do attitude.....sorry....lots of typos....
suek Member
I feel for you to have been dxd at such a young age. I can’t imagine how frightening that must have been. For me the disease set in at age 20, but I was not dxd until a major attack at age 42. It was a blessing to have lived out those years in sweet ignorance of what was to come. Now at age 6, I too have had it twice as long as not. Having SPMS I no longer worry about relapses, but the symptoms continue to give me trouble. I have developed a host of conditions on top of MS that makes MS feel like a casual walk in the park. I accepted all my conditions as a part of being human. No one ever promised me that I would live a life free of care. Having lost my brother and parents to cancer by your age, I learned to have resilience, to accept change and adapt as it happens. MS will not be the end of me. Accepting does not preclude you from fighting. It doesn’t mean giving up nor giving in. Rather it means you are ready to do battle. Life is too short and I plan to live it while I am alive.
1. suek Member
 Excuse me, that is age 61! Sorry! Typo!
maryaijj Member
That was Beautiful. I love Your Attitude. Just Awesome. Your totally right. I don't even read about symptoms and the like, I dint want to imagine a false symptom, or know anlbout it....it might not go there with me, I wouldcworry and scared if manifesting symptoms out of worry....for me...better not tobkniw....go to Dr. Regularly, and count my Blessings..I live your can and will do attitude. Excellent.
1. maryaijj Member
 Meant I love your can and will d I attitude.....sorry....lots of typos....
jwpack08 Member
That's exactly how I feel too. I was also diagnosed young (around 15). Now I'm in my 30's and it's depressing to think about what life was like before my MS. I had to make many changes in order to live. I wouldn't wish MS on my enemies. It is tough to not know what symptoms will take charge on a daily basis. Having speech issues, trouble walking, and thinking problems can be cruel. Stay strong!
brianneb Member
Thank you for posting this, Calie. It's almost my three year diagnos-aversary 😛 and your writing makes me consider that I probably have a lot of work to do around acceptance vs. just accepting that I have a diagnosis.
lindacolorado Member
I am 70 years old and have had MS 37+ years. I too have had this disease over half my life. Actually, my first dysfunction came at 17, long before I knew I had MS. My next dysfunction came at 33 when I was going through the stress of a divorce. If I had been changing my diet or taking an MS med (before any MS meds had been developed or any focus on diet had been thought of), I'm sure I would have attributed the length of relapse to either of these. My worst fear was that my issues were a result of a possible brain tumor. MS became a relief. It was a life altering but not life threatening disease. Being an optimist myself, I always looked at what I could do, not on what I couldn't do. Since I found I was allergic to steroids, it was not an avenue to address the relapses for me. Regardless, I learned the relapses would go away on their own, just take a little longer. There were always residuals to the relapses that became my normal relating to much of what you have written about. I don't think I was ever in denial, just did what I had to do. I worked a full-time career as a stock broker for 20 years after finding out I had MS. It was after crossing into SPMS that I became slowly worse and losing abilities that greatly affected my quality of life. Losing my eyesight took the independence of driving away from me. It also took reading books away from me. There were other problems such as chronic bladder infections and constipation. I had lost all feeling from my ribs through my groin. The pleasure of intimacy with my husband was gone. After 9 years in the progessive stage of this disease, I got help when I joined an MS study with Dr. Damadian, the original nventor of the MRI, and Dr. Rosa, a cranial cervical expert. These doctors gave me back many lost abilities. It has been 8 years and no regression with the regained abilities. I got my eyesight back and can drive again and read books (even got the ability to speed read gone since a relapse in 198😎. I got the ability to feel the urgency to urinate back and can empty my bladder, ending the chronic bladder infections. Needless to say, the quality of my life has been greatly improved. I still have MS, am still bothered by heat, wish I could walk further, and am more hopeful than ever that answers to this disease are closer than anyone thinks.
1. debincolorado Member
 <inline-mention username="lindacolorado" user-id="4033949"/> What did you do with doctors Damadian and Rosa to experience such fantastic results? It almost sounds too good to me true!
2. lindacolorado Member
 <inline-mention username="debincolorado" user-id="4102777"/>I know this sounds too good to be true, and when I joined this MS study with Dr. Damadian and Dr. Rosa, my expectation was very limited with the stage of MS I was in. I had known Dr. Damadian for years and had enormous respect for this man. I had watched how the medical community had ridiculed him, then medical manufacturers stole his technology. The MRI became the standard for diagnostics over the last 50 years, vindicating his brilliance, being able to think outside the box in order to help people. It was the MRI that first identified the lesions in the brain, making an MS diagnosis beyond just physical symptoms. When I was invited to join this study, I wasn't sure I could be a good example of what could potentially benefit patients with MS since I was in the progressive stage of the disease and other doctors seem to have nothing to offer me. Dr. Damadian imaged me for hours in the Upright Multi-Position MRI (which he also developed) with advanced software and hardware able to image the movement in the cerebral spinal fluid (CSF). It is the only MRI able to do this. My images showed 4 blockages of CSF flow in my cervical spine due to cervical scoliosis. In addition, my atlas disc was diagonal and the C2 was rotated. Dr. Damadian explained to me that this blockage of CSF flow was causing a back-up of CSF in the ventricles in my brain where the CSF is produced. He showed me evidence of all this in the images he was able to project on a screen that looked like something from Nassau. More importantly, he showed me a video of the leakage of CSF from all 4 of the ventricles in my brain, due to this blockage. I could follow the leakage directly to my lesions. The CSF was illuminated on the screens in front of us. This experience was intriguing...and also horrifying. How could I be fixed? I imagined a complicated surgery at best. Dr. Damadian then introduced me to Dr. Rosa. It is an understatement to call him a cranial cervical expert. After studying my MRI images, he performed atlas alignment using the atlas orthogonal instrument to perfectly align my cervical spine. It was a painless procedure and totally non-invasive. This opened my CSF flow, proven by the subsequent MRI images done after this treatment. I wouldn't have believed this possible if I hadn't seen the images taken before and after myself. So what did these doctors do? Dr. Damadian imaged me, and Dr. Rosa corrected the problem. It took advanced imaging and it took atlas alignment. It also took the knowledge of the CSF system learned by Dr. Damadian in his CSF flow study. It took the development of the Upright MRI with advanced software and hardware to get the imaging of my issues. AND it took years of research performed by Dr. Rosa, his pursuing the results of Dr. Damadian's ability to image the movement in CSF flow, and his ability to apply it to an approach to open the CSF flow with the use of atlas orthogonal technology. In this way, it is too good to be true...but it is true. I am living proof. Not all patients can be helped with atlas alignment alone. The challenge to some very bright doctors is to come up with more solutions. The imaging tells the truth. I hope this helps.
blackwolf065 Member
I am 65 years old and was dxed with RRMS close as I can remember, almost 10 years ago. From that point on, I have always said that I may have MS, but MS doesn’t have me. My neurologist told me from what he could piece together from my health records, it appeared I may have had it since my early teens. At first, I was upset knowing that the doctors kept saying my symptoms were just in my head and I was just looking to get drugs. Then I realized, there were no treatments for MS back then and in the little town I lived in, probably no one knew anything about it. He was upset because the original neurologist had enough information to make the dx back in ‘91’ but refused to. The same with the multiple others I had seen while moving across the country. However, I found the best neurologist to treat my symptoms and in 2 years I was in remission. Even stayed there threw a major heart attack, during which I was put into a medically induced coma for almost three weeks. I was told I coded 5 times on them both during surgery and out. And almost left this world a sixth time but for the attentiveness of my caregiver who managed to pull me out of the coma just as I was saying goodbye to her in my dream. It was decided that the MS had nothing to do with the heart attack. Then, as I was healing from that, I get hit with both Stage 3 Kidney Failure and major Anemia. Tests showed a tiny hole that probably had been there all my life, was leaking huge amounts of blood because of the blood thinners the heart doctor put me one. Thereby, causing my body to drain out almost all of my blood before anyone knew it was happening. Meanwhile, this leakage triggered the attack on my kidneys somehow -I have never been told how, causing me to now to be forever labeled as Stage 3 Kidney Failure. Now, all through this, the MS stayed in remission, I get told everything is either healed or (in my hearts case) healing itself, when somebody comes along with the common cold during the fall allergy season. If I can make it through the fall without getting sick, I am great until Spring! But no, I caught the cold, which became the straw that broke the camels back. The MS came out of remission with a vengeance! For a while, we thought it was just an extra long relapse. But we finally had to accept the fact that I no longer had RRMS. It had gotten worse and the treatment I was on wasn’t affecting it anymore. I am on a different treatment that keeps the brain fog at bay except for my worse days. My mobility issues are rapidly going from ok to worse although I still refuse to go into a wheelchair yet, no matter how bad the pain is. My gp’s fear is that one of the times I fall, one or both of my hips will break. I tell him my bones are thick. But I know the pain inside the bones is getting worse. I am going to try to see him about when my last bone density test was. I know I have said a lot here. There’s something I want ya to understand. While it’s believed that the MS is having a hay day messing around with all of these issues, My MS didn’t cause any of them! At least that’s what the doctors say. They can’t tell me exactly what damage MS is doing to my body because I have a pacemaker/defibrillator that’s not MRI safe. It can’t be removed from my body for fear my heart will not work properly.
johnnydangerously Member
Foul! Fourteen? That's especially unfair. I'm sorry you got hit with this at such a young age. Well-written piece, Calie. I think it gets at something we all experience in one way or another. Like you, I pubically admitted my MS to personal and professional acquatintences, friends, and family I couldn't hide it from. Over the years, this circle has become bigger and bigger. These days, I may be the only person I am trying to hide it from. And that's probably not always a bad thing. I want to ignore the disease when I can. It's probably only a bad thing when I do things I shouldn't--drive when I'm not seeing my best, pushing myself to continue working when I'm worn out: that kind of thing. I still want to be my old self, and it's tough to accept that I never will be, and, worse, will be less and less my old self as time goes on. I guess the trick is to accept my new self and my new limitations grace and positivity.