Prolouge
I explain the onset of my Autoimmune Disease and the events that lead to my Diagnosis, in my previous posts, found on ‘My MS Journey Series’ page.
Post-Diagnosis. From age 20 to now 25, I experienced 7 versions of myself, following my diagnosis. These versions, or what I will refer to as ‘stages’ herein, were my way of processing my new reality. The reality that my life as I once knew it, will be entirely different from this moment forward.
Everyone processes new information differently but do we really know how we will respond or feel when we receive bad news? Even if you’ve has received unpleasant news before, every person responds differently. And the same goes for a diagnosis.
Upon receiving a diagnosis, (or any serious news for that matter) there is no way of knowing what mental or emotional state we will be in or what kind of space we will create for ourselves and those around us. I sure didn’t know.
But what’s even more important and often not discussed in social conversation, is what to expect after the news. No one prepares you for bad news and no one prepares you for what to do after you’ve received it.
Most people I’ve talked to are not aware of how to process their thoughts and feelings, let alone sit with them. So why in this case, should it be any different?
Simply put, we don’t talk enough about how to process our thoughts, feelings, bad news, or diagnosis. I believe if we were made aware of 1) what we might experience, and 2) how to get through it, people would be in a better position to understand their reality.
So how do we make people aware? By sympathizing, connecting, and relating to others who are about to go through what you’ve been through or are also going through at the moment. Not only would this breed authenticity and vulnerability, but it is the stomping grounds for processing and understanding…something that I wish I had when I felt completely alone in my diagnosis.
Post Diagnosis Stages
1. Denial
2. Anger
3. Research
4. Anxiety / Fear
5. Acceptance
6. Activism
7. Peace
I didn’t realize I was going through what I call the “Post Diagnosis Stages” until I was on the other side of it…the more conscious, positive side of it.
Had I known a healthier and more stable way to process my diagnosis in the beginning, I could potentially have put myself in a better position (health wise), now. Or, had I just been made aware of the potential feelings I could experience, attitudes I could develop, or habits I may fall into, I could have given myself more grace through the confusion.
However, I do believe that everyone has a story that makes them special. I do believe that I am exactly where I need to be today, because of what I have been through before. And yes, I could have done things differently, but I will not dwell on that.
Instead, I can use what I experienced and learned to help other people…to make other people aware of what may come and to give them the grace and space to let them go through it, in their own beautiful way. If you have recently been diagnosed or received any sort of unsettling news, please read through the stages I experienced and why I had to go through each of them to be at peace now.
*This is solely my personal experience and thoughts. I am in no way a medical professional. 🙂
Denial
Denial for me was straight up ignoring my diagnosis. I continued on with my life as if nothing had happened. Continued to drink, eat like crap, and stayed stressed.
In fact, I didn’t make any changes when I was first diagnosed. You might say I stayed stagnant for this period. Perhaps it was my ignorance to think MS wasn’t a big deal and that I wouldn’t or couldn’t actually be affected by it.
I did everything I could to ignore. If I could ignore it, it was like it didn’t exist…which was far too easy with an invisible illness. I figured, if I can’t see it and I don’t talk about it, then there is no problem at all. I probably did what most young 20 year olds did when it came to dealing with difficult situations or feelings. I used distractions.
There are many ways to suppress and hide our feelings so we won’t have to deal with them.
But I was wrong. The more I denied my new realty, the more it manifested throughout other parts of my mind and body. What else was I not addressing? What or who was I also ignoring?
Anger
Anger = I could no longer deny that my body was suffering.
My toes and feet were numb from the heels I continued to ignore from my recent all night binder. My fatigue got worse as the climate changed, making every movement painful. My stress quickly turned into frustration as my grades started slipping, which only caused more stress.
The breaking point for me went like this… if I accept this fate, this news, this suffering and pain, that it would mean I was okay with it. The truth was, I wasn’t okay with it. And I wasn’t okay. So I drank and partied to distract myself from the breaking.
Instead, I became angry at my body. Angry it was putting me through what no other young 20 year old woman should have to go through. Angry that my body was giving up on me. On my plans. On my future.
My drinking mixed with an angry mind and a suffering body, turned me into a Bitch! I could barely go out in public without feeling negative or mean. The pain and hurt that was happening inside me, I was projecting onto the world around me. It wasn’t fair to the friends and family I lashed out as. (Looking back, I am so grateful for the grace and space they gave me during this time. A group of amazing people!)
At the time my mindset was small. All I could think was “poor me, why me”. What I didn’t have a chance to understand yet, was that it wasn’t “poor me,” but that it was “for me”.
Research
I can say now that I was not a pleasant person in my ‘Anger’ phase. It took me months to come to terms that I needed a new, healthy way of coping. I needed something that gave me joy and brought out the best version of myself, not the worst. And I needed it fast, before the support of my family and friends was diminished.
So, I started researching. I figured if it was time to dive into this new reality of mine, I should at least understand what the fuck was going on with my body.
Lesions. MRI Contrast. Relapsing. Remitting. Progressive. PML. Infusions. Wheelchairs. Immobile. Bed ridden. Early death.
The words that read every line of every website page about Multiple Sclerosis
The more I researched, the more I didn’t understand. My brain couldn’t wrap around the fact that this invisible disease that lingers on my brain and spinal cord, could do so much damage to the nerves and organs throughout my body. Grasping the idea that for the rest of my life I would be in chronic pain with daily fatigue and no one would know, was unbelievable.
I was astonished to learn that even if I were to receive no new progression of the disease, that I could still experience a relapse of symptoms from the younger years of my disease. And if i was lucky not to be relapsing, I might be in a state of remission, but I wouldn’t know it because I can’t see it. And, (summed up in my 21 yr old brain) depending on the type of MS I had, I could live a fairly normal life or my body could diminish quickly.
As I read, the words grew bigger and so did my anxiety. It was contradicting and I had no control.
It is so easy to get stuck down the rabbit hole of researching. The first times I researched, I could only do so for a small amount of time before the waterworks poured from my eyes. My stomach flipped many times as my hands shook holding the source of such horrifying information. Even scanning the phone was too much for me.
Much time would pass before I could venture into researching again thereafter. But slowly, and one day at a time, even for 5 minutes a day, I would read.
I read blogs that only scared me more…stories of men and women who had worst cases than mine. I felt grateful to “not have it that bad” but it didn’t make me feel any better. If anything, I became more aware. Aware that my condition, even though “not that bad”, and compared to others in worse positions, was still a serious condition. I learned that if I am going to face this head on, I had to get real about my reality.
Being aware, as unsettling as it may be, is a vital part in the journey of life with Chronic Illness. Sometimes we have to understand what we don’t want, to know what we do what.
What I knew for sure was that I didn’t want to end up in a wheelchair or bedridden or surcum to an early death. I wanted to have a full and enriched life, filled with many memories and positive stories, despite having MS. I knew that I didn’t want to let my body go to shit and be totally out of control. Instead, I wanted to listen to my body and connect with food, nature, and the world and people around me.
My ‘Research’ phase gave me my life back, but it was up to me to take control of it.
Anxiety / Fear
Now, that’s not to say that I had an ephiphany and *poof* everything was fine. It took a lot of practice, time, and energy to understand what I was capable of. My days continued…some were positive and uplifiting. I could get out of bed, work out, drink my fruit smoothie, get a protein based salad for lunch, journal, go to class, walk my dog, take time for my beauty routine, and hangout with my friends before bed.
And then there were still the days I could barely get out of bed, or get out of bed at all. Those days my anxiety was at its highest. I fell victim to the rabbit hole of “what-ifs” many times over. (AND I STILL DO TODAY!)
When fear of the future creeps into my life, I have learned the best thing to do is to face it, again, head on. Journaling about my fear is the best way to do this. You can try this with any fear or anxiety you are facing. Here is an example of one of my journal entries:
- What is it I am fearful of? The future
- What about the future? Not being “able”
- Why is that important? Because I fear I will become dependent on people
- Why don’t you want to be dependent on people? Because I will feel like I lost a piece of myself
- What scares you about losing yourself? I feel like I won’t be in control of my life
- Why is control important to you? Because my Autoimmune Disease is uncontrollable, so having even some sense of control, makes me feel like everything is okay.
And, scene. LOL. But really, this was a tactic I used from my therapist often. In whatever I was facing, I would ask “Why?” over and over until I got to the real issue at hand. You see, The Future was not what I really feared.
Sure, there are lots of possibilities of what the future could look like for a person with MS, but it was deeper than that. What I was really afraid of, as a person with an illness they cannot control, was an uncontrollable life.
I knew what I did not want, which allowed me to understand what I do want…which is to take control of my life NOW. To fuel my body with foods and things that are good for it. To travel the world and eat handmade pasta and cheeses, and drink the best reserved wines. To cry at the Opera house in Venice, to go Truffle Hunting in Turin, and to see the Christmas markets in Germany.
That was how I would take back my control. Controlling what I did want and learning how to say ‘No’ to what I didn’t want, was something I learned by age 23. My anxiety and fear, (my thoughts and feelings), which were once debilitating, were leading me to my most true desires.
Sometimes we have to bend and break before we can outgrow our current phase and move forward into our next.
Acceptance
When I was ready to start medicine, my ‘Acceptance’ phase truly began. To combat the effects the treatments had on my body, I started practicing Alternative Modern Medicine. My practice taught me I had full control over the choices I could make, which either hindered or helped my MS. Enjoying my practice gave me the joy and excitement I needed to feel like I could live a full and enriched life.
Accepting became easier as I developed a routine. My morning routines are my anthem. It is the safe space I have created to be and feel. I start by opening all the windows and shutters throughout the house- letting light in is a must! I turn on my Yoga & Meditation playlist and enjoy a morning water and coffee overlooking our garden if it’s cold, or in my garden if it’s warm out. Afterwards, I practice yoga to set my intention for the day and listen to my body.
For the time between yoga and work I will do an assortment of either: journaling, listening to a podcast, reading, studying Italian, and/or meditating. I am lucky if I can complete all of these, but each day my body has different needs and abilities so it is okay if I don’t get to them.
Next I water my garden and change for either a walk or lunch reservations on the lake.
Afterwards, I work on the blog while also juggling my real estate portfolio in between.
By the time Collin gets home from work I have dinner ready for us and we enjoy our time together before making it to bed. Occasionally, he will take over the cooking and cleaning if my legs have given out. Usually on these nights I take a relaxing epsom salt bath soak and let my body decompress.
Whatever it is I need that day or moment, I do. And if I ignore it, I usually end up paying for it at some point in the future. That is what my ‘Acceptance’ phase looks like. It’s Knowing.
Activism
What happens after you’ve accepted your diagnosis and you’ve begun living your life again? For me, I wanted more. I wanted to educate others on Autoimmune Diseases like Multiple Sclerosis. Since I didn’t know about the illness (due to the privilege of having good health at the time), surely other people didn’t know either.
It became my mission to do my inner work first…to become grounded in my knowing, before I could help others. So that was exactly what I did.
For the next couple of years I attended virtual conferences, raised money for the National Multiple Sclerosis Society‘s Bike MS event, and bought tickets to luncheons and events in my city. Soon, a ‘Dallas Activist Leader’ position became available for the NMSS.
The position entailed meeting with Congressional Leaders to push for specific bills and legislature that were currently being passed through office by informing our representatives of our favor in the policy, and sharing our story behind that reasoning. The reasoning always being a benefit to the Autoimmune community.
Aside from that, I have been a member of the Junior League of Dallas for the last 3 years, which is a group of women who volunteer and support organizations for the greater good of the Dallas community. Being on the Diversity & Inclusion steering committee and the R&D committee has opened my eyes to the glory in a life of service to others.
Although I can’t share the exact news at this time, I can say that I have been working with these 2 organizations in order to reach and impact more people, and my heart has only grown bigger for them both.
Peace
Lastly, (or at least up until now), I can easily say I am at peace with my Autoimmune Disease. Through all the mountains and valleys this illness brings, every version of me that I have experienced, has all brought me to this exact moment. I feel as if I am exactly where I need to be, and that is peace to me.
I’ve learned so much about myself since my diagnosis and I honestly don’t know what a life without my MS would be like.
It has taught me what I want in life and has given me more reason to just do it, and do it now. You can literally wake up one day and not feel your entire body and learn you have a life altering illness. So why not live for today?
If there is ever a time my thoughts or feelings have me feeling anxious, I now go inward and create space to feel and work through them. I no longer live in fear of the patterns of my past or what the future could hold.
If I am in pain or know I might be experiencing pain soon, I stop and create space to be with that pain, in whatever way it needs.
And when I realize that I am right in the middle of life’s most blissful and beautiful moments, I tune into the present moment to become aware of my life. This beautiful life, I am grateful for. To feel and be at peace, is the greatest gift that I have received in my journey with MS…post diagnosis…my 7th stage.
