Grief with MOG Antibody Disease

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A woman wearing a pink top, green bottoms and yellow slippers looking out of window at clouds. Above the image are the words "Dealing with Grief" written in white lettering.

A diagnosis of MOG Antibody Disease (MOGAD) can be overwhelming and trigger grief. Grief is a strong, often overwhelming emotion involving loss. It does not only apply to death; it can apply to any form of loss, including the loss of ability or the sense of normality for a person.

A MOG Antibody Disease diagnosis can trigger a loss of normalcy and/or a loss of control in one’s life. To adapt to life with MOGAD some changes could include making time for treatments, appointments, and other events you did not do before.

In this blog post, you will learn about the different stages of grief, how they might apply to someone with MOGAD, and some actions you can do to help overcome this grief.

The Stages of Grief

The Five Stages of Grief were described by Swiss psychiatrist Dr. Elisabeth Kübler-Ross in her book On Death and Dying, published in 1969. Originally the model was made to classify the emotions and thoughts a person experiences after losing someone. But now, the model includes any form of loss and adds two new stages, one before and one after the five original ones.

The Seven Stages of Grief are:

  • Disbelief and Shock
  • Denial
  • Guilt and Pain
  • Bargaining
  • Anger
  • Depression
  • Acceptance

Due to a person’s diagnosis with MOGAD being unique, you should loosely interpret the stages of grief. Some people go through these stages differently or return to previous ones they have already experienced. Grief can be a long process, and it is not unusual to return to some of the stages again.

1. Disbelief and Shock

The first stage of grief is disbelief and shock, which is often the initial reaction to being diagnosed with MOGAD. The disbelief and shock could relate to the sudden appearance of symptoms during an attack/episode related to MOGAD or the actual diagnosis itself.

Disbelief and shock happen when your brain cannot process the situation; it can freeze to protect your mind and body from reality.1  The disbelief and shock stage can last for several weeks. In the event of a MOGAD diagnosis, you may need to give the diagnosis some time to sink in.

2. Denial

The denial stage is when a person refuses to accept reality. Denial is a normal response of the body. It is another way of emotionally protecting the individual by pushing back or avoiding what is happening to them.

In MOGAD, this could be a patient believing their diagnosis is wrong or that the symptoms they are experiencing are not happening. Because of this, denial can also impact whether an individual seeks medical care when needed.

This stage could be potentially tricky due to the difficulty in diagnosing MOGAD. For example, patients previously diagnosed with other conditions, such as Multiple Sclerosis before MOGAD, may deny the new diagnosis if they have accepted the previous one.

Actions:

  • Try to give yourself time to process the situation.
  • Give yourself breaks and distractions to avoid overwhelm. MOGAD is overwhelming, so taking time out will help.
  • If symptoms relating to MOGAD persist, please seek medical help urgently.

3. Guilt and Pain

The guilt and pain stage is where the reality of the situation starts to set in, often causing emotional pain. This pain could relate to remorse over missed opportunities, losing your old self, and accepting your new reality. There may also be a heightened awareness of physical pain relating to the damage caused by an attack/relapse.

In MOGAD, some individuals may feel guilty for not acting differently before the diagnosis or episode. Examples of this could include not seeking medical help sooner or for some of their lifestyle factors which they may believe influenced or caused the condition.

As a result of guilt and pain, people may turn to alcohol and drugs to try to block the pain, but this tends only to worsen things in the long run. Ultimately MOG Antibody Disease is not your fault, and it is encouraged to try to look ahead and not dwell on your past actions.

Actions:

  • MOG Antibody Disease is not your fault, do not blame yourself for the diagnosis!
  • Avoid the use of alcohol or other drugs to block out the situation.
  • Use support groups, your healthcare providers, and your networks to talk to others about it.
  • Schedule regular downtime to distract yourself from overthinking and negative thoughts.

4. Bargaining

This stage is when an individual tries to make sense of loss. Bargaining can be a way to regain some of the control lost in a traumatic event. 2

In the bargaining stage, an individual may start to make lifestyle changes as a promise to fate or the powers that be to reverse the diagnosis. Some may use prayer and try to understand the reason or lesson behind what has happened to them.

In MOGAD, some lifestyle choices associated with the condition could include diet, exercise, sleep, or work. Despite being unable to change the past, bargaining is seen as a different way of processing the situation.

It’s important to mention again that you should not blame yourself for your diagnosis or attack. There are still many unknown things about MOGAD and why it happens, and accusing yourself is unlikely to bring relief. Bargaining can often lead back to the previous stage of guilt if a person believes their actions in the past could have influenced their outcome.

Actions:

  • Don’t beat yourself up about what could/couldn’t have happened.
  • MOGAD Support groups can be a helpful way to express your feelings to others.

5. Anger

The Anger phase is when an individual may tend to lash out at those around them. This stage can be difficult as it could damage relationships with family, friends, and healthcare providers. Anger related to MOGAD could be due to the seeming unfairness of the condition, especially if it has negatively impacted you both in the present and future.

Depending on your situation, anger could also be directed towards your healthcare provider and doctors. Especially if they misdiagnosed you or you were not given the correct treatment in the first instance. Anger could also be directed towards yourself, especially if you believe you could have prevented your diagnosis by acting sooner.

Anger is normal when involving a MOGAD event. A positive is that this stage could be a sign that you have come to terms with accepting your diagnosis and are passed the Denial stage.

Actions:

  • Anger is normal to experience; you are going through something traumatic, which takes time to work out.
  • Take a moment to recognise what you’re feeling and why you might feel that way.
  • Find a healthy way to release anger and avoid damaging relationships with those around you.

6. Depression

This stage is where an individual reflects and recovers from the traumatic event. Depression is often the longest and hardest stage as an individual realises what has happened to them. The previous stages have been protecting an individual until this point, so they feel all the different feelings associated with the diagnosis.2

Depression can sometimes muddle and confuse symptoms, including making pain worse. This can cause additional complications with symptoms relating to MOGAD, as symptom changes could indicate another attack. Depression can be something that can require additional services such as counselling.3

Getting to this stage could be good news in that you are on your way to the next stage of acceptance. Being able to deal with your emotions is a positive sign that you may get past your grief.4 However, it is not unusual to return to this stage later in the future.

A person may return to this stage on the anniversary of an attack or if a relapse happens.

For example, a person with MOGAD may return to this stage on the anniversary of their diagnosis or an attack or if a relapse happens.

Actions:

  • Let yourself feel the despair and use this as a time of recovery.
  • Ignore those who encourage you to ‘snap out of it.’ It would be best if you used this time to process the diagnosis.
  • Use support groups to talk with other patients about how you feel.
  • Seek additional help if needed, such as counselling.

7. Acceptance

Acceptance is the final stage of grief, where a person adapts to their new life, and the depression goes away. It is important to note that acceptance does not necessarily mean happiness but when a person decides to move on and look towards the future. Acceptance is a personal experience, and it may take a different time for someone else to reach this stage.

With MOGAD, acceptance could include accepting your relationship with your body, the symptoms that may have appeared, and the treatment or medication required.

Reaching the acceptance phase does not mean you won’t revisit the other stages in the future. But you may find yourself regaining new normality and wanting to “get on with it.” Acceptance should be celebrated, and some may find that they see the silver linings in their situation and reprioritise their lives to focus on the essential things to them.

8. Finding Meaning

Some believe that there is an 8th stage – Meaning. In 2019, Dr. David Kessler published “Finding Meaning,” which described this stage as “a phoenix rising from the ashes moment” where you can turn the traumatic event into an opportunity.

Some examples of finding meaning with MOGAD could be:

  • Appreciating how MOGAD has made you a better and stronger person.
  • Spending time working with a MOGAD non-profit to raise awareness and funds
  • Starting a blog to talk about your experience and offer advice to others
  • Set aside time for recreational activities or relationships you care about, which you may have neglected before the diagnosis.

References

1.          Gupta S. What is Emotional Shock? VeryWellMind. https://www.verywellmind.com/emotional-shock-definition-symptoms-causes-and-treatment-5214434. Published 2022. Accessed January 21, 2023.

2.          A patient’s guide to The 7 Stages Of Grief. LetsFCancer. https://www.letsfcancer.com/guide/7-stages-of-grief-patients/. Accessed January 21, 2023.

3.          Falkner A. The 5 Stages of Grief That Come with a New Medical Diagnosis. Healthline. https://www.healthline.com/health/chronic-illness/stages-of-grief-new-medical-diagnosis. Published 2020. Accessed January 23, 2023.

4.          Torrey T. How to Cope With Grief From Difficult Diagnoses or Medical Errors. VeryWellHealth. https://www.verywellhealth.com/coping-with-grief-2615450#citation-2. Published 2022. Accessed January 23, 2023.

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About the author 

Scott Tarpey

Scott was diagnosed with Transverse Myelitis (TM) in March 2020 caused by MOG Antibody Disease (MOGAD). He founded MyMyelitis in July 2020 to raise awareness of TM, MOGAD and similar neurological conditions to help others with their recovery.