A guest blog by Caroline Szczuka about the ways in which partners, friends & family members can help suppport their loved ones going through TSW.

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Unless you have personally suffered with topical steroid withdrawal (TSW) you will not be able to fully understand the constant battle and pain of the condition. But there are definitely things you can do to help!

Maintaining any relationship while suffering with TSW is hard. You become a shell of a person who is no longer excited by social outings or weekend expeditions. You avoid all interactions and frankly, you just want to be alone.

As a caregiver or friend, this is extremely frustrating! You see your loved one struggling but are unsure of how to help.

My boyfriend was by my side during the darkest stages of my TSW. I felt like a patient rather than a girlfriend and would often feel guilty for needing his help. However, without his care my withdrawal process would have been completely different and excruciatingly painful.

There were moments where it wasn't easy, and times where TSW proved to be more difficult than usual. The condition pushes you to your limits while testing your patience and hope.

When I reflect on my journey, I realize that my boyfriend adopted certain behaviours which calmed me down and smoothed out the rocky process.

I encourage any TSW caregiver to try the following four actions:

• LISTEN
• UNDERSTAND
• BE PATIENT
• LOVE

These strategies are crucial in easing the inevitable mental battle of TSW!

Listen to your loved one

When we're suffering, it is so infuriating when someone denies or ignores the existence of TSW, and begins to lecture about ‘bad eczema flares’.

When a sufferer opens up to a caregiver and discusses their pain, anger, and sadness… listen. In that moment we're at our most vulnerable, and all we want is to feel heard. Let us vent! TSW conversations may become repetitive, but when a we share our feelings and are really heard, the trust between the two of us is strengthened. 

Understand that your loved one is grieving

Sufferers often reminisce about their old life and mourn their pre-TSW selves. Our inability to live a carefree life is crushing, and the fear of another flare hangs over day-to-day activities. As a caregiver, try to understand what's going on when your loved one cancels social outings, and changes plans. Understand that there's likely to be a period of time when their personality might change, and they might become a home-body. Let your loved one grieve, let them feel sad about their inability to go out, and offer to stay with them rather than leaving them alone.

(photo: Caroline and friend on a night out)

TSW causes a person’s body and environment to change. Each day can bring a new set of obstacles and physical difficulties. As a caregiver, please express your unconditional love and support! Let us know you're there for us. Show that your love is constant and unwavering. During the worst parts of my TSW, my boyfriend’s expressions of care gave me comfort and hope.  I knew that even if my body changed completely over night, the one constant would be his love. Small acts of kindness like foot massages, making dinner, or popcorn-movie nights made a huge difference to my healing.

Be patient

TSW is a long, hard process, which will test both the caregiver and the sufferer to their absolute limits! Celebrate the little victories, and try to find solutions to any problems as they come up. The waiting game is definitely one of the hardest aspects of TSW, so why not take this opportunity to start a new hobby together, immerse yourselves in a new documentary series, or simply talk to each other!

Changing the terminology of TSW also impacts the mental state of the sufferer. As a caregiver, telling friends or family that “we're struggling with TSW” rather than “he/she has TSW”, or “we're healing from TSW” rather than “he/she is healing” makes the sufferer feel like they are not fighting alone and that they are a part of a team.

Gratitude!

I am now over seven months TSW and am living a life filled with gratitude and joy!

Not a day goes by without me appreciating the commitment and effort my boyfriend exemplified during my withdrawal. The journey strengthened our relationship and enabled us to grow and learn from the experience. We have now fallen back into our pre-TSW life and routine. We no longer fear what each new day brings, and we are once again taking spontaneous trips and adventures.

To all caregivers: thank you for your unconditional love and support. Thank you for your endless effort and constant aid. Know that everything you do is deeply appreciated and that your care is giving us the strength to keep fighting.

We could not conquer TSW without you!

 

Caroline Szczuka is from Toronto, Canada and currently completing her second year of law school, while healing from TSW. She charts her journey with TSW at @liversante_tsw