Forgiveness is an essential component for living well with chronic illness. Forgiveness is especially important for anyone living with an invisible and misunderstood illness like EDS.
Why Bother Forgiving?
Forgiveness is in fact for yourself. Holding onto feelings of anger or hate towards others will only end up harming yourself. These feelings can’t change what happened in the past. Ruminating over these topics drains emotional and cognitive energy. When living with a chronic illness all forms of energy are precious.
Forgiveness is an essential component to personal growth and healing. EDS brings about a unique set of circumstances, which tend call for immense amounts of forgiveness towards others. As described by Professor Grahame, “No other disease in the history of modern medicine, has been neglected in such a way as Ehlers-Danlos syndrome.” The lack of awareness and understanding often leads to anger. This anger is often directed towards the medical community, the general public, and even friends or family who fail to recognized the significance of our struggles. I’ve found forgiveness to be a process as opposed to a single act. I would like to share my favorite method for working through the process of forgiving.
The Ho’oponopono Forgiveness Method
The Ho’oponopono forgiveness method is defined in the Hawaiian Dictionary as:
(a) “To put to rights; to put in order or shape, correct, revise, adjust, amend, regulate, arrange, rectify, tidy up make orderly or neat, administer, superintend, supervise, manage, edit, work carefully or neatly; to make ready, as canoemen preparing to catch a wave.”
(b) “Mental cleansing: family conferences in which relationships were set right (hoʻoponopono) through prayer, discussion, confession, repentance, and mutual restitution and forgiveness.
The process is simple and involves using these four phases. You can say these phrases in any order you choose. You should use the order that makes you feel most comfortable for your given situation.
Please forgive me.
I love you.
Here’s a great example that will walk you through how to use Ho’oponopono.
Here’s an account of my so called “EDS forgiveness journey.” Everything described in this excerpt comes from what I’ve learned from fellow EDSers as well as my own personal experience. This writing is essentially directed towards myself. It’s not necessarily intended to guide anyone else’s life, although if it helps remind you to forgive feel free to use it. I just want to be clear that I’m not asking anyone to agree with my personal perspective. I believe each of us will find a unique way to come to terms with forgiveness and I encourage everyone to work through things on their own terms.
An EDS Forgiveness Journey
In the days of pre EDS diagnoses, family and friends may have taunted our illness. Medical professionals misdiagnosed us as hypochondriacs or attention seekers. Generally, our complaints were dismissed until physical degradation reached unimaginable deterioration. By the time most of us were diagnosed, so many systems were malfunctioning , that no one had any idea of were to start with treatment and medical care. We will never know how our lives could have been different with earlier diagnoses and interventions. Yet different could be for the better or for the worse and the past is behind us either way. Inevitably, there is likely a long list of medical professionals we hold feelings of anger and resentment towards… it’s time to accept that holding onto this energy is no longer to our benefit. Acceptance of the past is one of the first steps for forgiveness.
Forgiveness isn’t about validating another persons harmful words or actions. Forgiveness is about accepting that the situation occurred and then figuring out how to move forward from it. Doctors have driven us to our breaking points too many times to count. Often it’s ignorantly out of what they truly believe is in our best interest. Sometimes it is driven from there own inadequacies or inability to admit their own limitations of power. Perhaps, many of them are just as frightened as we are. It must be painfully frustrating to watch an EDSer suffer without knowing what treatment to prescribe. Even a true healer can hardly help us within a failing system. Living through the terror of this medical system can teach us the most about ourselves and others. To completly free yourself from the negative energy of the past, you have to be brave enough to feel it long enough to fully move through it. Repressing past trauma will only delay the healing process.
The most difficult, but vital person to forgive is yourself. We may have exacerbated joint dysfunction by inappropriately pushing through painful activities. We pretended to be normal and attempted to keep up with peers at the cost of our health. Not understanding or accepting our physical limitations may have consequently brewed feelings of inadequacy and low self esteem. Now is the time to revisit these feelings with kindness. Understand that your past self did the best that it could given the circumstances. The constant battle between intuitively knowing something is wrong, yet being forced to ignore it can confuse the mind on a very deep level. This kind of inner turmoil can tear apart our sense of self. By forgiving your past self, you will help recover and strengthen your inner being. Diagnoses is just the beginning of our journey towards wholeness. Overtime, I believe we can all find a way to reunite with this lost sense of intuition.
Living with EDS there will continsiouly be people we need to forgive. Until there is better awareness and understanding, frustrating interactions with medical professionals will forever be a part of our journey. Once you’ve worked through forgiving those in the past, try to view each new medical provider as an individual human unassociated with their professional role. We may have to consciously remind ourselves not to make preemptive assumptions about upcoming interactions. We need to give every new medical provider an equal chance to prove past assumptions wrong.
Living with an invisible illness often leads to problematic interactions with the general public. Remember that the average person is not trying be obnoxious and if they are, then don’t let it become your problem. We don’t owe anyone an explanation for our life. If someone says or does something inappropriate, we always have a choice whether it’s worth our energy to address. If this person and their beliefs are not physically affecting our lives, I think its best to internally forgive them and move along with life. Spreading awareness is important, but we must remember to protect ourselves first. There’s no need to waste energy and argueing with people don’t want to understand.
The hardest group to forgive may likely be our family and friends. Some of our loved ones leave us as we’re faced with chronic illness. It’s easy to be angry when those we need the most run farther away, but remember it’s just as hard for them as it is for us. People often leave us behind because they themselves are not strong enough to cope with our illness. It’s not their fault and it’s not their conscious choice. They are likely just as upset as we are. Unfortunately, some of these folks may cope with the situation by going into denial. When loved ones doubt our symptoms or diagnoses it can negatively impact our health and wellness. We can empathize with these folks and forgive them, but that doesn’t mean we should still keep interacting with them. Forgiveness doesn’t mean friendship. Try to maintain faith that those who matter most will come around as soon as they are able to.
We often wish we had more help physically, financially, and emotionally. Helplessness can breed anger. As we loose control of our lives, we may try to blame our suffering on others. Thinking in terms of “if only we had …” is a slippery slope. Yes, it is true that some of our suffering could be alleviated if we had access to unlimited physical assistance, finances, and emotional support, but we have to remember that those who love us the most are not to be blamed for these unfortunate circumstances. Everyone who loves us wants to help and if they can’t help, they likely suffering from the guilt of not being able to provide us with better care.
In summary, if we can accept the past and remain hopeful for the future we will have the best chance at healing. Letting go of anger and blame towards others frees up cognitive space. The more we can remove negative energy from our lives, the more we will be able to focus on the beauty within ourselves. I’ve come to accept that no one will ever understand my struggle with Ehlers-Danlos syndrome. I believe this syndrome is truly too complicated for anyone other than a zebra themselves to grasp. I can now forgive my family, friends, and healthcare providers for failing to understand the incomprehensible. All that matters for my future is that I surround myself with people who are willing to be patient and trust me. I’m currently working on developing the skills to properly communicate my needs. This way anyone who is motivated and able to help can easily enter into my life. True kindness doesn’t need to understand. Generosity is a respectful act of love, Forgiveness is the key to hope.