The 7 Stages of Grief in TSW

TSW is as much an emotional and mental journey as it is a physical one. Emotional management is extremely important, considering how much emotions contribute to stress and how much stress contributes to flare ups. Emotional pain from TSW is often overlooked, and difficult to address, possibly even trickier to manage than the physical symptoms.

We go through a lot of grief in TSW. There are many losses to address, which cause lots of emotional upheaval and turmoil. The loss of your appearance, the loss of your ability to function daily, the loss of your job, the loss of friendships and relationships, the loss of your identity, self-esteem and confidence. One loss is overwhelming enough, yet we are confronted by multiple losses at one go. It is no wonder that TSW causes many to be depressed and suicidal; it is a very existential condition.

The purpose of this post is not to lament on how terrible TSW is to our emotional health, but rather to understand the process of grieving, identify which stage of grief you are in, and how better to deal with these emotions. This post is meant to be informative and empowering. Recognising your pain gives your opportunity to discover your strengths and your resilience, and pick up tips on how to overcome these feelings of grief.

This article could also be helpful to caregivers who need insight into how their loved one is feeling during TSW. It is difficult for TSW warriors to communicate raw, deep emotions without breaking down or getting into an argument/conflict, and this could be a bridge to communicate these emotions and inform caregivers how to provide emotional support from them.

The 7 Stages of Grief

The most widely known framework for understanding the process of grief is the Kubler-Ross Model. This includes the 5 stages of Denial, Anger, Bargaining, Depression and Acceptance. However, I would like to use an expanded version of it, called the 7 stages of grief, which includes the following stages:

• Shock and denial: A state of disbelief and numbed feelings.

• Pain and guilt: Feeling that the loss is unbearable and that you’re making other people’s lives harder because of your feelings and needs.

• Anger and bargaining: Lashing out at others, blaming others who you think are responsible for your current state, bargaining with God or a higher power that you’ll do anything they ask if they’ll only grant you relief from these feelings.

• Depression: A period of sadness, isolation and loneliness during which you process and reflect on the loss.

• The upward turn: You have processed the previous stages of grief and are now finding more peace within yourself

• Reconstruction and working through: Beginning to reconstruct new meanings to your experience and building your life back based on these new understandings

• Acceptance and hope: Being able to visualise a positive, new life for yourself and work towards that.

How the 7 Stages manifest during TSW

1) Shock and denial:

The most common reaction upon discovering that you are addicted to topical steroids, or that your skin condition was not eczema but instead TSW, is to not believe it. It goes against “conventional wisdom” and advice, which you have been schooled/conditioned to believe. It is hard to believe that your condition could be caused by the very thing that was meant to help you, and it is difficult to swallow that you are experiencing a horrific condition that people in the support groups are going through. The pictures and stories shared are terrifying, and it is simply too scary to accept that this could be you too.

Many who have not yet begun withdrawal face this shock and denial. Upon finding out about TSA/TSW, it may be too terrifying to commit to withdrawal, knowing how horrific the condition can be. This is not necessarily a bad thing, for your mind is shielding you from what it is not prepared to face. It is always best to give yourself time to absorb and digest the information.

Let the emotions come as they do, there is no need to force yourself out of denial, for emotions cannot be forced. Pace yourself, but also acknowledge the denial and shock.

2) Pain and guilt:

When the bubble of denial and shock is burst, emotions creep in, and you start to feel pained for yourself, and pained for those around you. You may feel guilty for having applied the topical steroids on yourself, you may feel a sense of guilt towards yourself and your family. You may even feel shame and guilt for “not having done enough research” before using these creams on yourself. You start to think back on all the times you have used the topical steroids without knowing what they could do. You may even feel like you might have done something wrong in your life to deserve this, and blame yourself for any past mistakes. These emotions are heavy and intense, and difficult to express in words.

Again, sit with the pain and guilt. Work out these feelings, and while it is alright to indulge in them, ensure that you do not let any feelings of guilt overwhelm you. TSW/TSA is not your fault, you need not feel guilty about it, and you need not feel guilty towards any caregiver whom you are leaning on. Keep a mantra that reminds you that none of this is your fault or your doing. It is now your time to receive, and lean on others. You did not know better, and you can only move forward from here to heal yourself.

3) Anger and bargaining:

In some way, anger and bargaining are a branch outwards from guilt and denial. You wish for this guilt to be transferred to someone else. How could doctors do this to you? You feel like a poor victim of the system, you feel like you have been mistreated. Thoughts of getting even cross your mind. Some even feel anger towards their parents or loved one for bringing them to the doctor’s for a prescription. You also ask: why me? What did i do to deserve this? Could this please just disappear? Some will find themselves bargaining for time: “I think I should I withdraw 3 months later, I will be ready then.”

Anger can make us see things in binary terms and in black and white thinking. The fear and trauma causes us to see steroids as absolute evil, and it is difficult to emotionally accept that steroids are a neutral drug, which can be helpful in certain instances, but can also be misused. Accept that anger, for it is justified; you have been using topical steroids for an inappropriate amount of time, and was probably not made aware of its side effects. However, try not to let any anger blind your judgement of the drug, or of doctors, or others who need to use it for their health condition, or those who continue using it despite knowing what TSW/TSA is. Everyone has their own journey to walk, and have different life experiences and thus their own perspectives. Educating and sharing your story calmly and peacefully will open the other party to listening, and if they are not ready, there is no need to hurry them. They have their own lives and journeys to lead; they may come around eventually, and you may support them and educate them further when they do. They may change their actions when they see you approach from a place of kindness and love.

4) Depression:

Once it has sunk in that you are indeed going through TSW/TSA, depression hits. You begin the grieving of everything you have lost. You begin to feel the deep, intense pain. You may feel like life has lost any meaning, and feel hopeless about recovery. You no longer know who you are, you no longer know what you can contribute to others and society. You lose joy in anything you used to like doing. This is the pit of TSW, the darkest moments, most often felt in the dead of the night.

The most common inclination is to suppress these feelings. I would suggest inviting yourself into the darkness, sitting in it, and observing this deep emotion. There is a lot to be explored there, and it can be scary, for you are blind and there is no compass. However, if you reach your hands out and explore its walls, you will discover things about yourself in there. There will be some shiny corners, smooth edges, shimmers of light that could guide you. These will be your strengths, your resilience, the people who love you and support you, your resources. Cling onto those while navigating your way through. Remember that nothing is permanent, and this is just another phase in your life that will pass. There is no need to fear the dark; ironically it will help you find yourself.

5) The upward turn:

Upon processing the previous stages, there will be moments where you feel a little calmer and more peaceful. The feeling you get after a good cry. These moments of calm can be fleeting at first, and will come and go. It takes time to transition to such a state. However, each time you feel it, take stock of it, and celebrate it as a milestone. Encourage yourself, be your own cheerleader. Even if it does not last for long it is still an achievement. Tune in to these moments and understand them, where did this peace come from? These calmer moments prepare you for rebuilding your life and moving forward with an action plan.

6) Reconstruction and working through:

Part of grief is letting go of what defines you and recreating a new you. Many look back to the past and wish to reconstruct a past self that used to look good, who used to be successful at school or work, who had many friends and was carefree. However, that past self is now gone, and a new you is waiting to be rebuilt. It is important to look back and reflect and come to acceptance of the loss of your past self, but do not indulge in it to the point of becoming depressed again. Instead of pondering about the past, think about what version 2 of yourself would like to be.

What would the future you look like? What do you have to focus on rebuilding now? Is it rebuilding new friendships and connections? Rebuilding a new identity for yourself? Rebuilding a career? Let yourself daydream, and take small, baby steps to fulfill them. You may change your mind midway about a certain path, and that is okay. Enjoy exploring and reconstructing new meaning for yourself. Weave your TSW story into your life in an empowering way. You are a survivor - what does that say about you? How do you want others to perceive this side of you? What new traits and habits have you picked up that will contribute to your new life?

7) Acceptance and hope:

Acceptance of the fact that you are going through TSW, acceptance that you feel like you have lost your identity, acceptance of your appearance, acceptance that you have lost your job, friendships, relationships… There are many, too many to list.

Acceptance of a situation means that you can now fully take responsibility and action for your healing. When you are angry, in denial or feeling guilty, it is hard to focus on truly helping yourself and your healing. Feelings of peace and acceptance allows for you to take action on self-care and self-healing. To try out various methods of healing without the fear and trauma hindering your progress. Work on letting go of the trauma, and be aware of when your trauma and past experience is informing your decisions, for they may not be the best decisions for you. Part of healing is keeping a reasonably open mind, and making informed decisions.

Think of the possibilities that lie ahead of you, instead of seeing the negatives. If your movement and functioning is restricted, ask yourself, what can you do instead? If walking or running is difficult, can you write, read and watch? What are some things you can still do? What are new skills you can pick up?

I find that drawing inspiration from other people works very well for me. I enjoyed watching inspirational movies of people who overcame great odds and thrived in spite of them. It opens me up to hope and possibilities.

Not a linear journey

The 7 stages of grief are not linear. You will find that you often jump between stages, or even experience multiple stages at once. Being aware of which stage you are experiencing now, can inform you of what you should do to go through it, and can also inform you what perspective you may hold about your feelings to understand them better. Observe all emotions as if you were in a helicopter looking down at yourself. How do you look to you? What advice would you give to yourself? What support would you give to yourself? How will you love and encourage yourself?

I hope that this article will help anyone going through complex and complicated emotions due to TSW. May it be a piece that will bring you some clarity… Let’s navigate through TSW together, you need not navigate in the dark alone.