“We MiND” Campaign: David’s Story – Living with a Chronic Illness


David’s Story !!!

Living with Myasthenia Gravis and other chronic illnesses

 

A must read ….Written by David Viljoen

 

This is my list of the stages that we go through living with MG or chronic disease, from the initial shock through acceptance and hope, toward a better understanding of how to live with Myasthenia Gravis or any other chronic disease or condition. These stages commonly apply to both the patient and any caregivers or a companion. The phases we go through when first diagnosed are similar to the samephases I’ve been through. 

1. Shock – when initially diagnosed, even after an extended diagnosis period, you will likely experience surprise and shock at hearing that there is no known cause and no possible cure. These are harsh and difficult words to hear and absorb. Why me, why now? What did I do to cause this? You feel stunned and immobilized. 

2. Emotional release or pangs of grief and distress – after the initial shock, the feeling you get when you think no one cares or understands and you are alone. Distress that your life is compromised and you can no longer function the way you once did. You are no longer “normal” by any definition you know. You feel helpless because things are out of your control (and anyone else’s for that matter). This is a time when you are desperately seeking help knowing that you may not find it. All the while, the medications, treatments, surgical procedures are not the miracle cure that you expected. The major pity parties and maybe even some denial (refusal to believe what is going on) fits in this area, certainly frustration is here too. There’s room for lots of emotional issues here; which many experience on a recurring basis.

3. Panic – the feeling that you don’t know what to do next and learning how to cope and manage things that are overwhelming and you don’t know which way to turn or what to do next. Just trying to think what the next breath is like can be a daunting task. Doing the simplest things turn into major frustration and confusion and thinking rationally becomes impossible. 

Here is where we become convinced that modern medicine has made a mistake or must be hiding something from us. We convince ourselves there must be some other solution being “covered up” by the establishment. Our searches lead us to snake oil salesmen and other solutions that seemingly place us back in control of an uncontrollable situation. We blindly search “cures” from other cultures while they are in turn searching our “solutions” because theirs do not work. 

This is when we are still grasping to discover the “magic” that will make us well or at least control the monster we are living with. The meds, the injections, the surgery; which shall I try, what do I do, where do I go for help and understanding? Why doesn’t this work for me? 

4. Guilt – panic has passed and you realize that you cannot do all that you used to do. Your life has changed. Whether you’ve made simple adjustments or have had to go on disability, you feel guilt for not pulling your weight, for placing burdens on others that once you were able to handle. Your lifestyle is changing and it is out of your control. 

Living with continued guilt for some time can be a tremendous hazard. Guilt such as when you are no longer able to participate in social things the way you used to, etc. The guilt others inflict on you (and you allow it). It usually starts innocently as a statement like “you look fine” and “what is your problem” and “are you still not feeling well” and “how are you now that you aren’t working”, “are things getting better”? You find yourself constantly defending and validating your position to others. You continually try and prove that you still COULD do it all in spite of feeling bad even when no longer able. 

5. Hostility and anger – guilt and frustration could sort of overlap here. Why me, why now? There is a realization that there is a total lack of control over circumstances and anger that you no longer can do as you please. There follows an inability to make yourself understood or to understand others; intentions or actions. Anger builds at those who don’t or can’t understand or don’t seem to care. Anger also makes you internalize because of your own feelings. This phase generally will include a spouse or close caregiver. Unless you and the caregiver can come top terms with the reality of chronic disease, there will be dire circumstances arise. MG will not go away. You must get through this and you must have help; physically, spiritually, and emotionally. 

6. Inability to resume a normal life – because your definition of “normal” is no longer possible. Normal is just a setting on your washer; that’s all. Normal is what you make it today. However, your “normal” has changed. Life never stands still even if you aren’t sick. Your life is upside down with the helplessness and hopelessness you feel. You are still trying to prove that you can function the way you once did and continually fail at simple tasks. You can’t see anything positive in your future. You become too focused on the things you are not able to do and begin to stop doing the things you can for fear of other loss. 

7. Acceptance – when you finally “get it”. You somehow see that life may never return to the way it used to be. You begin to rethink how you do things and learn to accept help from others while admitting your limitations. You accept the weak days, the duck walks, the speech impediments, the inability to function normally, and all the other MG stuff as “just another day”. However, acceptance does not require abandonment of life. It is simply a final phase toward hope and living with a renewed sense of being. 

8. Hope – when you see a new way of living emerging and you are content with yourself. Although reliving some of the cycles, you become happy and can move forward but on a different path from the one you were on. You make accommodations and set short attainable goals and realize that they may never bear the intended fruit but you are flexible enough to accept that. You realize that there is still life in you but you are just living it differently. You begin to focus on what you are able to do instead of pursuing the impossible. 

Observing many that go through these phases of shock to finally acceptance and hope, we see (and express) a lot of anger and hostility at times; even among us. Just say to yourself that this is all part of the process. Remember that we are all individual in the way we handle things and when we express anger, pity, or guilt. Some of us pass through these stages over and over again or get locked in one stage longer than someone else. We also may pass through each at different speeds and that is mostly expected. This is all part of the process of learning to accept our changed life and refocus on what we are able to do. 

For those of faith, many find themselves in a wrestling match with their faith in the supernatural. We begin a series of questions. Is God angry? Have I sinned grievously? How can I attract God into this situation? These continuous questions eventually break one’s faith or make it decisively stronger. 

The promises of God are forever and his love is unconditional. However, life is to all and there is no exemption. Being angry with God or withholding your affection toward Him will not change your circumstance. If I am to be chronically ill, at least I have a friend who will help me through. If I become angry and bitter with God, I will simply be alone “AND” chronically ill. 

YOU (all of you) are okay – if you want to be. 

Whatever this is, it is “NORMAL” and it is ‘LIFE” – your life now. 

Asking for faith and hope 

Thank you, to all my friends, family and doctors who have been so understanding, helpful and supportive ! 

David Hugo Viljoen – WE MiND CAMPAIGN

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