10 tips for getting therapy for fear of anaphylaxis

If you’ve ever had an anaphylactic reaction or seen your loved one go through it, you’ll know how utterly terrifying it is and how helpless you feel. Living with life threatening allergies can be tough for everyone, including you and those around you.

It was a very dark time for me, after a very serious anaphylactic reaction that left me unconscious and reeling with fear that finally led me to seeking some therapy. In fact the last two anaphylactic reactions were awful, the last one leaving me in Intensive care for a night it was so serious. I plan to write about these two experiences in detail soon because I’ve never done that on this blog before, but it could help others to hear my story. So watch this space…

So I soldiered on. I survived. But I was just surviving, I was not thriving any more.

I had started to get panic attacks and at first I didn’t even recognise them as that.

I had dark dreams and experienced a horrible sensation of waking during the paralysis state of sleep, it felt like a huge weight on my chest and I was terrified because I knew I was awake but I couldn’t move. This was usually accompanied by some kind of black cloak pressing down on me to suffocate me.

As is usual in our family I pushed these emotions down, I ignored them and carried on as best I could.

That isn’t great advice, but it’s what I did.

Until I couldn’t hold the lid down on the fear anymore and it burst out, spilling over the edges of my life to soak my every footstep.

I couldn’t speak about what happened to me in America, and I couldn’t speak about that last anaphylactic reaction, the one where I can’t even remember anything, so I bottled everything up until finally I had to face up to things and ask for help.

Getting help for my fear and panic attacks

It wasn’t easy. And I’ve never really opened up and spoken much about these last two anaphylactic reactions, the ones that left me so damaged and fearful. It’s time now so here goes, this is what I did:

1. The Anaphylaxis Campaign – I tried first to speak to the Anaphylactic Campaign and phoned their help line. They were really helpful and I am sorry to say, I wept through that whole phone call. They were able to talk to me about it and help me to calm down and plan my next steps. They also have a lady who does counselling who has experience of speaking with people who have anaphylaxis. Unfortunately I ended up not taking advantage of this because she was really well booked up and did not see people who were already getting other counselling, and by the time I got to speak to her I had also started the ball rolling with the NHS. She had a long waiting list and the date to speak to her was months in the future so I let that one fall by the wayside and pursued the NHS. So I can’t say how that would have gone but it helped to know support could be there if I had been less successful with my GP.
2. Speak to your GP and allergy specialist – I was actually really luck to have a service available on my doorstep and I found my GP and my allergy clinic really helpful in getting me through to this, pointing me to the website and encouraging me to refer myself.
3. Healthy Minds NHS counselling – If you live in the Buckinghamshire or Oxfordshire area there is a self referral service where you complete a survey online to request help. Visit Healthy Minds here. It was probably because I had said I was scared of dying from anaphylaxis every day, I was literally on super high alert and was really struggling with high anxiety, crying, and isolating myself as a way of coping. The process was not good for me, to get the counselling you get a phone call to gauge what help you need and that phone call almost tipped me over the edge. To begin with it felt good that someone was finally speaking to me but the questions I was ask were so triggering and made me so much more worse in the short term.
   • The woman asked me, ” Have you had suicidal thoughts?” to which I replied No!
   • She then asked, “You said you were thinking about death, how would you kill yourself?” I replied saying I didn’t want to kill myself, I was just scared it might happen my accident if I ate the wrong them.
   • To which she responded with, “If you WERE going to kill yourself, how would you do it?” So I replied again saying, “I don’t want to kill myself…” by now I’m weeping…
   • So again she replied with. “But if you had to kill yourself, if you did want to, have you thought about how you would do it? No, No NO I said. She was really upsetting me. All this obsession over planning my own death.
   • She asked me again, “If you were going to kill yourself, how would you do it?” So I burst out, “I would lock and bolt my front door and eat peanuts and drink milk until I died from anaphylaxis.” This seemed to be enough for her, she’d got what she needed and she ended the call saying I’d hear back if I was eligible for counselling.
   • This almost broke me. I cried for hours, alone, broken, hurting and shaking all over. How is this helpful?
   • I actually realise I never complained about this back when it happened and I feel this feedback could actually be invaluable. Because I now faced who knew how long waiting for help and was now feeling ten times worse.
   • Eventually I was referred for mixed group therapy for Anxiety and Pain management. I wasn’t sure if this was really what I needed but I went along anyway. Boy was it hard, having not been able to open up to ONE person, facing a whole group of strangers was at times too much, I found it painfully hard, but also immensely rewarding. The sessions drained me more than I could have imagined but I realised we all had things in common; each person in that counselling session had different pains, fears and anxiety but we were all fundamentally the same, human beings hurting. And together we shared our conditions, our journeys and our fears and hopes and anxieties. I learnt so much on these sessions and began to work on finally loving myself and caring for myself – something I had never ever done in my life before Realising you don’t like yourself and don’t spend any time caring for yourself of showing empathy to yourself was an eye opening. I had thought that my carry on regardless, don’t complain, don’t talk about it, there are people worse off mentality that I’d been taught was working but putting on a brave smile only goes so far.
   • There were about 9 sessions as a group and then I was referred to one to one counselling which I found much more helpful. These sessions lasted for 12 sessions and were so incredibly helpful. I’ll share more on how this process works in another blog post. I slowly began to heal and realise I was worth care, love, empathy and that i had it all inside me, everything I needed to heal was there in me all along.
4. Make your world small and safe – I stopped going out, I made my life small and safe but at the time that’s what I needed to do to feel safe. This can really help in the short term but it’s definitely not a long term solution. It allowed me space to calm my nerves, to be still and to recharge my batteries.
5. Start opening up – Finally I found the courage to speak to friends, to speak to the friends who were with me when these anaphylactic reactions happened which was really helpful, and to speak to my family. I also shared some of my experiences with the outside world eventually after the court case, sharing my Personal Witness statement and speaking at events about how to avoid the mistakes made with me to help save lives. It gets easier to talk and now I can talk about it without crying, fear gripping me and shaking with anxiety. I think that because the restaurant who made the mistakes that put in A&E the last time were taken to court it made me bottle up even more. The lawyers had told me NOT to discuss it, so that the case would not be affected, but I took this literally and just refused to process it at all. Not helpful!
6. Panic attacks – Learning how to deal with these has really helped. I’ve not had one for a long time now but they really floor you. Mind always happened in busy places when I was with people, bar one awful one in London when I was all alone and couldn’t work out what to do to get to safety. By learning how to breath through it, tell someone what’s happening and find somewhere to sit quietly while it passes. I would just gently hold myself, breath and remind myself I was safe, I was going to be OK. This was just temporary. They’re not pleasant but they won’t kill you, though it feels like the end of the world when the panic sets in.
7. I wrote a book – Now I’m not saying you should all go out and write a book but writing therapy was fundamental to my healing. That’s because I love writing, for everyone recovery and healing will look different. It’s about finding what works for you. But it all came at the right time. I was asked to write a book shortly after my counselling had finished at t time in my life when change was happening. Of course I said yes and it was a huge therapy session in itself. It was like I was writing my guide to how I would now stay safe in every aspect of my life. To find out more, read Anaphylaxis: The Essential Guide: An Action Plan For Living With Life-Threatening Allergies.
8. Group follow up sessions – Following on from the Healthy Minds sessions there was the opportunity to attend group evening meet ups, which I really wish I had done because I was still struggling at first. I didn’t up doing this because it wasn’t easy to to get the information and it wasn’t close to where I lived. I felt a little overwhelmed about going and the process wasn’t smooth, I wasn’t sure how to access this and in the end let it slip away. I regret that now but it was available for those who could get there.
9. Learning to breathe – breathing techniques daily keep me grounded. If I feel that fear coming over me I stop, breath and take a few moments to collect my thoughts. What should I do? I always have the answer.
10. Knowing it’s OK – this anxiety is there for a reason, to keep us safe. It’s actually a good thing. We need it in our lives to alert us to danger and keep us safe so embracing it and learning that it’s OK, natural and that I can use it to help me remain vigilant, but that I can also learn to let it pass by when it’s not needed. Like clouds scudding across the sky, these thoughts and feelings of panic pass, they are never permanent. You are not your thoughts!

I really hope some of the above can give you hope and some guidance for a way forward. Just know that if you are really struggling with anxiety and fear about life threatening allergies, you are not alone! Don’t struggle on alone.

I’ve blogged about some of the things I do to help me remain in control so you may also find the following helpful:

• One of my panic attack experiences – ‘Allergy induced panic attack in a cafe‘
• I went through a lot of rage, anger and fear – ‘10 tips for dealing with rage, fear and anxiety about your allergies‘ is how I coped.
• 10 best herbal teas for anxiety
• Anxiety and Post traumatic stress in adults – please complete this survey if you are adult going through this.
• Focus on the positives because allergies can be a gift

Once again thanks for listening and reading and please share your experiences and thoughts below.

Photo by Juan Pablo Serrano Arenas from Pexels